Publications & Presentations

Since 1993, the team of experts at Adelphi Values has published in a wide range of peer reviewed publications and presented at many industry leading and disease specific conferences.

Our experience covers a wide range of products and devices across numerous therapeutic areas.

Addiction

Alcohol dependence, co-occurring conditions and attributable burden
Odlaug BL, Gual A, DeCourcy J, Perry R, Pike J, Heron L, Rehm J.
Alcohol and Alcoholism, 2015, 1–9. doi: 10.1093/alcalc/agv088

Training and fidelity monitoring of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russian: the IMPACT effectiveness trial
Connery H, Greenfield SF, Livchits V, McGrady L, Patrick N, Lastimoso C, Hart J, Nelson AK, Shields A, Stepanova L, Stepanova Y, Petrova L, Anastasov O, Novel’tseva S, Novel’tseva O, Shin S, on behalf of the Tomsk Tuberculosis Alcohol Working Group.
Substance Use and Misuse 2013;48(9):784-792

Effectiveness of alcohol treatment interventions integrated into routine tuberculosis care, Tomsk, Russia
Shin S, Livchits V, Smith Connery H, Shields AL, Fitzmaurice G, Nelson A, Greenfield S.
Addiction 2013;108(8):1387-1396

Do media messages change people’s risk perceptions for binge drinking?
Ayers B, Myers LB.
Alcohol Alcoholism 2012;47:52-6

Allergic conditions

Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteria
Bonner N, Panter C, Kimura A, Sinert R, Moellman J, Bernstein J A
BMC Health Serv Res. 2017; 17: 366

Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteria
Bonner N, Kimura A, Panter C, Sinert R, Moellman JJ, Bernstein JA
Poster session presented at: 20th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Philadelphia, PA, USA, 16-20 May 2015

The economic loss associated with nasal congestion in allergic rhinitis
Okamoto Y, Crawford B, Okuizumi K
Medicine and Drug Journal. 2014;50:3;103-111 [in Japanese]

The economic loss of allergic rhinitis associated with nasal congestion
Okamoto Y, Crawford B, Okuizumi K
Iyaku Journal (Medicine and Drug Journal) 2014, 50 (3): 103-111 [Japanese]

Development of a questionnaire to assess experience and preference of intranasal corticosteroids in patients with allergic rhinitis
Crawford B, Stanford R, Wong A, Dalal A, Bayliss M
Patient Relat Outcome Meas 2011;119

Psychometric validation of the experience with allergic rhinitis nasal spray questionnaire
Crawford B, Stanford R, Wong A, Dalal A, Bayliss M
Patient Rela Outcome Meas 2011;127

Animal health

Development of the canine dermatitis quality of life and treatment satisfaction questionnaire: a tool for clinical practice
Wright A, Tatlock S, Wells J, Panter C, Brohan E, Hillier A, Holland R, Mwacalimba K
Poster presented at the North American Veterinary Dermatology Forum (NAVDF), April 2017.

Development and psychometric evaluation of a canine dermatitis quality of life questionnaire: Results from three clinical trials
Postorino-Reeves N, Brohan E, Tatlock S, Panter C, Amodie D, Gasper S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 19th Annual International Congress, Montréal, Canada, 1-3 June 2014

Autoimmune diseases

Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosus
Hartz S, Liu-Leage S, Paget M, Pollard C, Cook J, Enstone A
Health and Quality of Life Outcomes 2015, 13:66

Elicitation of health state utilities associated with varying severities of flares in systemic lupus erythematosus
Pollard C, Hartz S, Liu Leage S, Paget MA, Cook J, Enstone A
Health Qual Life Outcomes 2015;13:66

Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosus
Hartz S, Liu-Leage S, Paget M, Pollard C, Cook J, Enstone A
Podium presentation at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosus
Hartz S, Liu-Leage S, Paget M, Pollard C, Enstone A
Value in Health 2014, Volume 17, Issue 7, A331

Patient-reported outcome measures for systemic lupus erythematosus clinical trials: a content validity and psychometric performance review
Humphrey L, Heron L, Pilling C, Holloway L, Højbjerre L, Strandberg-Larsen M, Hansen BB
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Cardiovascular diseases

Patient and clinician satisfaction with pharmacological stress agents (PSAs) used in single photon emission computerized tomography myocardial perfusion imaging (SPECT-MPI)
Shields AS, Hudgens S, Spalding JR, Kitt TM, Ojo O, Kristy RM, Mathias A, Morrissey L, Litcher-Kelly L, Houle CR
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018.

Psychometric validation of the Heart Failure Caregiver Questionnaire (HF-CQ®)
Strömberg A, Bonner N, Grant L, Bennett B, Chung M, Jaarsma T, Luttik M, Lewis E, Calado F
Patient (2017). https://doi.org/10.1007/s40271-017-0228-x

Development of a content-valid patient-reported measure to assess the statin intolerance experience
Jacobson TA, Edelman SV, Galipeau N, Shields AL, Mallya UG, Koren A, Davidson MH
The Patient – Patient-Centered Outcomes Research

Psychometric analyses of clinical outcome assessment (COA) questionnaires designed to evaluate satisfaction with pharmacological stress agents (PSAS) used in echocardiography
Spalding J, Hudgens S, Litcher-Kelly L, Shields A, Kitt T, Ojo O, Kristy R, Lee E, Mathias A, Morrissey L, Houle C
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Health outcome assessment in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the CHEST-2 long-term extension study
Bonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal S
Poster session presented at: the PHA Conference, Dallas, Texas, June 17–19, 2016

Health outcome assessment in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the PATENT-2 long-term extension study
Bonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal S
Poster session presented at: the PHA Conference, Dallas, Texas, June 17–19, 2016

Psychometric evaluation of a new patient-reported outcome (PRO) symptom diary for varicose veins: VVSymQ® instrument
Wright DD, Paty J, Turner-Bowker DM, Bradbury A
Patient. Epub ahead of print Mar 25. 2016. DOI 10.1007/s40271-015-0159-3

Development and content validation of a patient-reported outcome measure to evaluate statin intolerance in the real-world
Jacobson TA, Edelman SV, Davidson, M, Galipeau N, Shields AL, Mallya UG, Koren A
Poster presented at the 21st Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Washington DC, USA, 21-25 May 2016

Assessment of patient-reported health status in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the chest-2 extension study
Minai OA, Bonner N, Mathai SC, Busse D, Brockmann B, Teal S, Gater A, de la Orden M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Assessment of patient-reported health status in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the patent-2 extension study
Mathai SC, Bonner N, Minai OA, Busse D, Brockmann B, Teal S, Gater A, de la Orden M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Development and content validity testing of a patient-reported treatment acceptance measure for use in patients receiving treatment via subcutaneous injection
Tatlock S, Grant L, Spertus J, Khan I, Arbuckle R, Manvelian G, Sanchez R
Value Health 2015;18;8:1000-1007

Expert review on development of patient measure for statin intolerance
Foody JM, Sauris A, Edelman SV, Davidson M, Galipaeu N, Shields AL, Jacobson TA
Poster presented at the American Heart Association’s Quality of Care and Outcomes Research Scientific Sessions. Baltimore, MD USA

Health outcome assessment in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the CHEST-2 long term extension study
Mathai SC, Bonner N, Odufowora-Sita O, Minai OA, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater A
Poster presented at the American Thoracic Society International Conference Denver, CO, USA, May 15-20, 2015

Health outcome assessment in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the PATENT-2 long term extension study
Mathai SC, Bonner N, Odufowora-Sita O, Minai OA, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater A
Poster presented at the American Thoracic Society International Conference Denver, CO, USA, May 15-20, 2015

Psychometric validation of the caregiver burden questionnaire for heart failure (CBQ-HF v4.0)
Strömberg A, Bonner N, Grant L, Bennett B, Chung M, Jaarsma T, Calado F, Deschaseaux C
Eur J Cardiovasc Nurs. 2015; 14: S75-S76

Psychometric validation of the Heart Failure Caregiver Questionnaire (HF-CQv5.0)
Strömberg A, Bonner N, Grant L, Bennett B, Chung ML, Jaarsma T, Luttik ML, Lewis E, Calado F, Deschaseaux C
Poster session presented at the EuroHeartCare Conference, Dubrovnik, Croatia, 14-15 June 2015

Development and content validity testing of a treatment acceptance measure for use in hypercholesterolemia patients receiving treatment via subcutaneous injection
Tatlock S, Grant L, Arbuckle R, Khan I, Manvelian G, Sanchez R
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Amsterdam, Netherlands, 8-12 November 2014

Development and validation of the AFSymp™: An atrial fibrillation-specific measure of patient-reported symptoms
Arbuckle R, Abetz L, Medin J, Halling K, Kulich K, Edvardsson K, Coyne KS
Patient 2014;7;319-327

Evaluation of the post-stroke checklist (PSC): A pilot study in the United Kingdom and Singapore
Ward AB, Chen C, Norrving B, Gillard P, Walker MF, Blackburn S, Holloway L, Brainin M, Philp I, Global Stroke Community Advisory Panel (GSCAP)
Int J Stroke 2014;9;A100;76-84

Evaluation of the post-stroke checklist (PSC): A follow-up study in Singapore
Chen C, Ward A, Sanin M, Hilal S, Venketasubramanian N, Gillard P, Walker M, Holloway L, Brainin M
Poster session presented at Asia Pacific Stroke Conference, Taipei, Taiwan, 12-14 September 2014

Comparative efficacy and safety of novel oral anticoagulants in patients with atrial fibrillation: A network meta-analysis with the adjustment for the possible bias from open label studies
Morimoto T, Crawford B, Wada K, Ueda S
Poster session presented at: European Society of Cardiology, Amsterdam, Netherlands, 30 August – 4 September 2013

Development and validation of the living with pulmonary hypertension questionnaire in pulmonary arterial hypertension patients
Bonner N, Abetz L, Meunier J, Sikirica M, Mathai SC
Health Qual Life Outcomes. 2013 Oct 3;11:161

Patient- and clinician-reported satisfaction with pharmacological stress agents for single photon emission computed tomography (SPECT) myocardial perfusion imaging (MPI)
Hudgens S, Breeze J, Spalding J
J Med Econ 2013;16(6):828-34

Real-world characterization of hypertension patients in Japan: A 1-Year overview
Crawford B, Ong SH, Falvey H
Asian J Pharmaceutical and Clinical Research 2013; 6 (suppl 4): 93-96

Real-world resource utilization and costs following hospitalization of patients with heart failure and preserved ejection fraction in five regions of China
Li X, Crawford B, Wang D, Deschaseaux C, Liu L
Poster presented at: Great Wall International Congress of Cardiology, Beijing, China, October 10 – 13, 2013

A novel conceptual model of caregiver burden in chronic heart failure: a qualitative study
Blackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg A
Value Health 2012;15:A378

A novel conceptual model of caregiver burden in chronic heart failure: a qualitative study
Blackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg A
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Development of a patient-reported outcome measure and a clinician-reported outcome measure to assess satisfaction and preference with pharmacological stress agents for single photon emission computed tomography myocardial perfusion imaging
Hudgens S, Kothari S, Spalding J
Qual Life Res 2012;20:30

Development of a post stroke checklist to standardize long-term stroke care
Philp I, Brainin M, Walker M, Ward A, Gillard P, Shields AL, Norrving B and the Global Stroke Community Advisory Board
Journal of Stroke and Cerebrovascular Diseases,12, S1052-3057

Real world patient profile of patients with Reduced Ejection Fraction Heart Failure (HF-REF) in 5 regions of China
Li XY, Crawford B, Liao YH
Value Health 2012;15:A129

Real world patient profile of patients with Reduced Ejection Fraction Heart Failure (HF-REF) in 5 regions of China
Li XY, Crawford B, Liao YH, Wang D, Sung JC, Zheng J, McDonald J
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Real-world characterization of hypertension patients in Japan: A 1-year overview
Crawford B, Ong SH, Falvey H
Oral presentation at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 5th Asia-Pacific Conference, Taipei, Taiwan, 2–4 September 2012

The Caregiver Burden Questionnaire for Chronic Heart Failure (CBQ-CHF): Development and validation
Blackburn S, Strömberg A, Humphrey L, Maguire L, Deschaseaux C
JCard Fail 2012;18:S83

The post-stroke checklist: A tool for standardizing long-term patient follow-up
Ward A, Chen C, Norrving B, Gillard P, Walker M, Blackburn S, Brainin M, Philp I, on behalf of the Global Stroke Community Advisory Board
Presented at the 8th Annual World Stroke Congress, Brasilia, Brazil, October 10-13 2012

Evaluation of the measurement properties of the anti-hypertensive adherence survey
Hudgens S
Value Health 2011;14:A382

Evaluation of the measurement properties of the anti-hypertensive adherence survey
Hudgens S, Lynch J, Pasquale K, Zacker C
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

How patients with chronic stable angina perceive and live with their disease on an everyday basis?
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Relative efficacy of bivalirudin vs. Heparin alone in STEMI patients treated with primary PCI – an indirect treatment comparison
Medic G, Schwenkglenks M, Eijgelshoven I, Smith A, Day J, Plent S, Bergman G, Toward T
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Validation of a patient-reported outcome (PRO) measure and a clinician-reported outcome (CRO) measure to assess satisfaction and preference with pharmacological stress agents for Single Photon Emission Computed Tomography (SPECT) Myocardial Perfusion Imaging (MPI)
Hudgens S, Kothari S
Value Health 2011;14:A255

Validation of a patient-reported outcome (PRO) measure and a clinician-reported outcome (CRO) measure to assess satisfaction and preference with pharmacological stress agents for Single Photon Emission Computed Tomography (SPECT) Myocardial Perfusion Imaging (MPI)
Hudgens S, Kothari S
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Understanding of stroke and coronary heart disease in the UK: an exploratory study
Ayers BN, Myers LB
Psychol Health Med 2010;15:474

Cost-effectiveness of valsartan in Japan: results from the Jikei heart study
Shimizu M, Crawford B, Ikewaki K, Taniguchi I, Kamae I, Dahlof B, Drost P, Mochizuki S
Value Health 2009;12:A151

Central nervous system and neurology

Burden of Disease and Current Management of Dementia with Lewy Bodies: A Literature Review
Tahami Monfared AA, Meier G, Perry R, Joe D
Neurology and Therapy journal

Use of antipsychotic blood levels in clinician decision making: A cross-over study using clinical vignettes of patients with schizophrenia
Savitz A, Melkote R, Riley R, Pobre MA, McQuarrie K, Williamson D, Banderas B
Psychiatry Res. 2018; 267:25-29

Novel integrative approach combining patient, physician and empirical assessments for diagnosing secondary progressive multiple sclerosis
Meier DP, Bennett B, Tolley C, Kilgariff S, Tomic D, Ziemssen T
Poster presented at the 7th Joint Congress of the European Committee for Treatment and Research in Multiple Sclerosis–Americas Committee for Treatment and Research in Multiple Sclerosis, Paris, France, 25–28 October, 2017.

Cultural relevance of the global impact of Dravet syndrome in Australia, Italy, the US and UK
Nabbout R, Auvin S, Cross JH, Guerrini R, Scheffer I, Thiele E, Chiron C, Irwin J, Mistry A, Williamson N, Grimes R, Bennett B
European Paediatric Neurology Society (EPNS) conference

Development and content validation of a  preliminary core set of patient- and caregiver-relevant outcomes for inclusion in a potential composite endpoint for Dravet syndrome
Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N
Epilepsy & Behavior. 2017; 78: 232-242

A qualitative assessment of key symptoms associated with the progression from RRMS to SPMS by physicians and patients
Ziemssen T, Bennett B, Tolley C, Kilgariff S, Simsek D, Lahoz R, Verdun Di Cantogno E
Poster presented at the American Academy of Neurology, Vancouver, Canada, 15-21 April 2016

Challenges in the health economics of acute pain: A rapid review of the literature
Braileanu G, Johnson BC, Ashraf S, Borrill J, Hirst M
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Development of the multiple sclerosis (MS) Early Mobility Impairment Questionnaire (EMIQ)
Ziemssen T, Phillips G, Shah R, Mathias A, Foley C, Coon C, Sen R, Lee A, Agarwal S
J Neurol (2016) 263: 1969. doi:10.1007/s00415-016-8210-4

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H
Poster presented at the 68th annual meeting of The American Academy of Neurology Annual Meeting in Vancouver, Canada

Towards a composite clinical endpoint: Identifying a core set of patient and caregiver relevant outcome measures through qualitative research on the global impact of Dravet syndrome
Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N
Poster presented at: European Congress on Epileptology, Prague 2016

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H
Movement Disorders. 30(10):e7, SEP 2015

Assessing the impact of caring for a person with schizophrenia: Development of the Schizophrenia Caregiver Questionnaire
Gater A, Rofail D, Marshall C, Tolley C, Abetz-Webb L, Zarit SH, Berardo CG
Patient. 2015 Feb 14.

The feasibility of using electronic clinical outcome assessments in people with schizophrenia and their informal caregivers
Tolley C, Rofail D, Gater A, Lalonde JK
Patient Related Outcome Measures 2015, 6:91—101

Development and validation of the fatigue symptoms and impacts questionnaire – relapsing multiple sclerosis (FSIQ-RMS™)
Stokes J, Schuler R, Yaworsky A, Hunsche E
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 19th Annual International Congress, Montréal, Canada, 1-3 June 2014

Psychometric analyses to inform item reduction and evaluate sensitivity of the Early Mobility Impairment Questionnaire for multiple sclerosis
Phillips G, Mathias A, Coon C, Agarwal S, Sen R, Shah R, Ziemssen T
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Psychometric testing of the Early Mobility Impairment Questionnaire for multiple sclerosis
Ziemssen T, Mathias A, Coon C, Agarwal S, Shah R, Phillips G
Poster presented at the 6th Triennial Joint Meeting of ACTRIMS and ECTRIMS, Boston, USA, 10-13 September 2014

Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in schizophrenia
Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Berardo CG
Schizophr Res Treatment. 2014;2014:368215. Epub 2014 Apr 3

The effect of vortioxetine on health-related quality of life (HRQoL) in patients with major depressive disorder (MDD)
Florea I, Danchenko N, Loft H, Rive B, Pendlebury S, Abetz L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

A decision aid to assist decisions on disclosure of mental health status to an employer: protocol for the CORAL exploratory randomised controlled trial
Henderson C, Brohan E, Clement S, Williams P, Lassman F, Schauman O, Murray J, Murphy C, Slade M, Thornicroft G
BMC Psychiatry 2012;12:133

Anticipated discrimination among people with schizophrenia
Uçok A, Brohan E, Rose D, Sartorius N, Leese M, Yoon CK, Plooy A, Ertekin BA, Milev R, Thornicroft G; INDIGO Study Group
Acta Psychiatr Scand 2012;125:77

Assessing health-related quality of life (HRQoL) in major depressive disorder (MDD): Do commonly used instruments meet EMA requirements for psychometric properties and content relevance
Danchenko N, Rive B, Pendlebury S, Abetz L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Association between public views and reactions to mental illness and self-stigma among individuals in 14 European countries
Evans-Lacko S, Brohan E, Mojtabai R, Thornicroft G
Psychol Med 2012;42:1741

Development and psychometric properties the Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill health
Clement S, Brohan E, Jeffery D, Henderson C, Hatch S L, Thornicroft G
BMC Psychiatry 2012;12:36

Reliability and validity of the Japanese version of the Children’s Depression Rating Scale-Revised (CDRS-R)
Denda K, Fujii Y, Nakato Y, Kako Y, Tanaka T, Crawford B
Saishin Seishin Igaku (Newest Psychiatric Medicine) 2012; 17 (1): 51-58

Stigma and discrimination: Critical human rights issues for mental health
Randall J, Thornicroft G, Brohan E, Kassam A, Lewis-Holmes E
In M. Dudley, D. Silove & Gale F (Eds.) Mental Health and Human Rights. Oxford University Press, Oxford 2012

Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace
Brohan, E, Wheat K, Henderson C, Malcolm E, Barley E, Clement, S, Slade M, Thornicroft G
BMC Psychiatry 2012;12:11

Systematic review of pain measurement strategies to support product labeling in US regulated clinical trials
Shields AL, Stokes J, Caron M, Emery M
Poster session presented at: 31st Annual Conference of the American Pain Society, Honolulu, USA, 16-19 May 2012

The effect of vortioxetine (LU AA21004) on health-related quality of life (HRQoL) in patients with major depressive disorder (MDD)
Florea I, Danchenko N, Loft H, Rive B, Pendlebury S, Abetz L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

The impact of spina bifida on caregivers
Rofail D, Maguire L, Heelis R, Colligs A, Lindemann M, Abetz L
Neurol Ther 2012;1:4

Disability hate crime and targeted violence and hostility: a mental health and discrimination perspective
Clement S, Brohan E, Sayce L, Pool J, Thornicroft G
J Ment Health 2011;20:219

Employers’ attitudes to people with mental health problems in the workplace in Britain: Changes between 2006 and 2009
Little K, Henderson C, Brohan E, Thornicroft G
Epidemiol Psychiatr Sci 2011;20:73

Pediatric restless legs syndrome: Analysis of symptom descriptions and drawings
Picchietti D L, Arbuckle RA, Abetz L, Durmer J S, Ivanenko A, Owens J A, Croenlein J, Allen R P, Walters AS
J Child Neurol 2011;26:1365-76

Reported stigma and discrimination by people with a diagnosis of schizophrenia
Rose D, Willis R, Brohan E, Sartorius N, Villares C, Wahlbeck K, Thornicroft G; INDIGO Study Group
Epidemiol Psychiatr Sci 2011;20:193

Self-stigma, empowerment and perceived discrimination among people with bipolar disorder or depression in 13 European countries: the GAMIAN-Europe study
Brohan E, Gauci D, Sartorius N, Thornicroft G; GAMIAN-Europe Study Group
J Affect Disord 2011;129:56

Use of pain instruments as endpoints in regulatory submissions: implications of the US FDA’s new patient reported outcomes (PRO) Guidance
Black PM, Shields, AL, Halling K
Poster presented at the 30th Annual Scientific Meeting of the American Pain Society. Austin, TX, USA, May 19 – 21, 2011

Translatability assessment of the post-migraine questionnaire
Lambe J, Acquadro C, Conway K, Ng-Mak D, Healy C, Norquist J, Fitzgerald K, Banderas B, Evans C, Kornstein A
Value Health 2011;14:A214

An interpretative phenomenological analysis of the psychological ramifications of hand-arm vibration syndrome
Ayers B, Forshaw M
J Health Psychol 2010;15:533

Caregiver burden in Alzheimer’s disease
Ito D, Stokes J, Piault-Louis E, Bonnet P
Poster session presented at: Alzheimer’s Association International Conference on Alzheimer’s Disease , Honolulu, USA, 10-15 July 2010

Cognitive impairment associated with schizophrenia: The humanistic and economic burden
Rofail D, Kitchen H, Heyes A, Heron L, Sacco P
Poster session presented at: American Neurological Association 135th  Annual Meeting, San Francisco, USA, 12-15 September 2010

Cost-utility analysis of refinamide versus topiramate and lamotrine for the treatment of children with Lennox-Gastaut syndrome in the United Kingdom
Verdian L, Yi Y
Seizure 2010; 19(1):1-11

Development of a caregiver burden assessment in Alzheimer’s disease
Ito D, Stokes J, Piault E
Poster session presented at: 62nd Annual Meeting of the American Academy of Neurology, 10–17 April 2010

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz L, Durmer J, Ivaneko A, Owens J, Croenlein J, Bolton K, Moore A, Allen RP, Walters A, Picchietti D
Sleep Medicine 2010;11:897-906

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz LA, Picchietti DL, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Bolton K, Moore A, Allen RP, Walters AS
Oral presentation at: 33rd  Sleep Conference, San Antonio, USA, June, 2010: A314

Employees with mental health problems: Survey of U.K. employers’ knowledge, attitudes and workplace practices
Brohan E, Henderson C, Little K, Thornicroft G
Epidemiol Psichiatr Soc 2010;19:326

Experiences of mental illness stigma, prejudice and discrimination: A review of measures
Brohan E, Slade M, Clement S, Thornicroft G
BMC Health Serv Res 2010;10:80

Measuring mental illness stigma
Brohan E, Slade M, Clement S, Thornicroft G
In G. Thornicroft & M Tansella (Eds.) Mental Health Outcome Measures (3rd edition), Royal College of Psychiatry, Oxford 2010

Mental illness and the workplace: Conceal or reveal?
Wheat K, Brohan E, Henderson C, Thornicroft G
J R Soc Med 2010;103:83

Pediatric restless legs syndrome: Qualitative analysis of symptom descriptions and drawings
Picchietti DL, Arbuckle R, Abetz LA, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters AS
Poster  session presented at: 33rd Sleep Conference, San Antonio, USA, June, 2010: A341

Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: the GAMIAN-Europe study
Brohan E, Elgie R, Sartorius N, Thornicroft G, GAMIAN-Europe Study Group
Schizophr Res 2010;122:232

Stigma and discrimination
Thornicroft, G, Metha, N, Brohan, E, Kassam A
In Bhugra D & Morgan C (Eds.) Principles of Social Psychiatry (2nd edition) Wiley-Blackwell 2010;331

Stigma and discrimination of mental health problems: Workplace implications
Brohan E, Thornicroft G
Occup Med (Lond) 2010;60:414

Alzheimer’s disease treatment: Assessing caregiver preferences for mode of treatment delivery
Abetz L, Rofail D, Mertzanis P, Heelis R, Rosa K, Tellefsen C, Roborel de Climens A, McBurney C, Thomas S
Adv Ther 2009;26:627

Global pattern of experienced and anticipated discrimination against people with schizophrenia: A cross-sectional survey
Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M; INDIGO Study Group
Lancet 2009;31;373:408

Helpseeking and stigma – A broader view
Clement S, Brohan E, Thornicroft G
The Psychologist 2009;22:192

Public attitudes and the problem of stigma
Thornicroft G, Brohan E, Kassam A
In M.G. Gelder,  Lopez-Ibor JJ, Andreasen NC and Geddes J, (Eds.) New Oxford Textbook of Psychiatry (2nd edition), Oxford University Press, Oxford 2009

Stigma and schizophrenia – Authors’ reply
Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M
Lancet 2009;373:1336

The psychometric validation of the Sheehan Disability Scale (SDS) in patients with bipolar disorder
Arbuckle R, Frye MA, Brecher M, Paulsson B, Rajagopalan K, Palmer S, Degl’ Innocenti A
Psychiatry Res 2009;165:163

Validation of the sleep impact scale in patients with major depressive disorder and insomnia
Lasch K, Joish VN, Zhu Y, Rosa K, Qiu C, Crawford B
Curr Med Res Opin 2009;25:1699

Eliciting utility scores for health states associated with Lennox-Gastaut syndrome
Yi Y, Verdian L, Oyee J, Tolley K, Heyes A
Value in Health 2008; 11 (6): A606

Rufinamide in the adjunctive treatment of Lennox-Gastaut syndrome (LGS): A cost effectiveness analysis
Yi Y, Verdian L, Jansen JP
Value in Health 2008; 11 (6): A605

Dermatology

Development and initial psychometric evaluation of patient reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa
Kimball A, Sundarum M, Banderas B, Foley C, and Shields AL
Journal of Dermatological Treatment

Development and psychometric evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS) – clinical trial and the SAPS – Real world patient reported outcomes
Amstrong AW, Banderas B, Foley C, Stokes J, Sundaram M, Shields AL
Journal of Dermatological Treatment

Agreement between patient and clinician ratings of disease severity in hidradenitis suppurativa, rheumatoid arthritis, and chronic plaque psoriasis
Foley C, Banderas B, Sen R, Yip C, Dickie G, Lamoureux R
Poster presented at the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November 2017

Assessing atopic dermatitis symptoms in adolescents and adults: Development of a patient-reported symptom diary
Hall R, Gater A, Wells J, Chen L, Papacharalambous J, Cappelleri JC, Hsu M-A
Poster presentation at the American Academy of Dermatology Annual Meeting, 3-7 March 2017

Psychometric evaluation of the Hidradenitis Suppurativa Symptom Assessment (HSSA) and Hidradenitis Suppurativa Impact Assessment (HSIA) in patients with hidradenitis suppurativa
Kimball A, Banderas B, Taylor F, McDonald J, Skup M, Calimlim B
European Academy of Dermatology and Venereology

Impacts of glabellar facial lines – A patient perspective
Solish N, Bertucci V, Hall S, Banderas, B, Foley C, Turner-Bowker DM, Shields AL,  Chung C, Rubio RG, Carruthers J
Poster presented at the 75th Annual American Academy of Dermatology (AAD) meeting. Orlando, Florida, USA, 2017

Adherence to topical therapies in actinic keratosis: A literature review
Foley P, Stockfleth E, Peris K, Basset-Seguin N, Cerio R, Sanches JA, Guillen C, Farrington E, Lebwohl M
Journal of Dermatological Treatment, 1-8

Evaluating the clinical meaning of the Hidradenitis Suppurativa Clinical Response (HiSCR)
Kimball AB, Sundaram M, Sen R, Naijun C, Shields AL, Gu Y, Okun MM
Poster presented at the 74th Annual Meeting of the American Academy of Dermatology (AAD), Washington DC, USA

Network meta-analysis to evaluate the efficacy of ixekizumab in the treatment of moderate-to-severe psoriasis
Hartz S, Walzer S, Dutronc Y, Himatlal Kiri S, Schacht A, Dakin H.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Psychometric evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS)-Clinical Trial and the SAPS-Real World Patient-reported outcomes
Armstrong A, Banderas B, Sundaram M, Foley C, Ojo F, Shields AL.
Poster presented at the 5th Congress of the Psoriasis International Network (PSO 2016), Paris, France, July 7th-9th, 2016

Content development of patient-reported outcome instruments for the measurement of the primary signs and symptoms chronic plaque psoriasis
Armstrong A, Sundaram M, Foley C, Pompilus F, Stokes J, Shields A.
Poster session presented at International Society for Quality of Life Research (ISOQOL), 22nd Annual Conference, Vancouver, Canada, 21-24 October 2015

Development of a patient-reported outcome instrument for the measurement of the sexual impacts of psoriasis
Cather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F,  Stokes J, AL Shields.
Presented at the 4th World Psoriasis & Psoriatic Arthritis Conference. Stockholm, Sweden, July 8-11 2015.

Development of a patient-reported outcome instrument for the measurement of the sexual impacts of psoriasis
Cather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F,  Stokes J, AL Shields.
Presented at the 73rd Annual Meeting of the American Academy of Dermatology. San Francisco, California, March 20-24, 2015

Development of a patient-reported outcomes instrument for the measurement of treatment satisfaction in plaque psoriasis
Armstrong A, Sundaram M, Foley C, Pompilus F, Stokes J, Shields AL.
Presented at the 4th World Psoriasis & Psoriatic Arthritis Conference. Stockholm, Sweden, July 8-11, 2015

Development of a patient-reported outcomes instrument for the measurement of treatment satisfaction in plaque psoriasis
Armstrong AW, Sundaram M, Foley C, Iovin R, Pompilus F, Stokes J, Shields AL.
Poster presented at the 23rd World Congress of Dermatology, Vancouver, Canada, 8-13 June 2015

Evaluating the dimensionality of complex PROs using bifactor analysis within an exploratory structural equation modeling framework: an example using the Patient-reported Scar Evaluation Questionnaire
Sen R, Pleil A, Coon C, Shields AL
Poster presented at the 22nd Annual Conference of International Society for Quality of Life Research (ISOQOL); Vancouver, Canada

Measuring disease specific impact and symptoms among patients with hidradenitis suppurativa
Kimball A, Sundaram M, Mathias A, Foley C, Shields A
Poster session presented at: 20th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Philadelphia, PA, USA, 16-20 May 2015

Development and validation of a novel patient-reported treatment satisfaction measure for hyperfunctional facial lines: facial line satisfaction questionnaire
Pompilus F, Burgess S, Hudgens S, Banderas B, Daniels S
J Cosmet Dermatol. 2015; doi: 10.1111/jocd.12166

In-depth investigation of patient-reported sexual, reproductive, and relationship impacts of psoriasis
Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields A
Poster session presented at: 72nd Annual Meeting of the American Academy of Dermatology, Denver, Colorado, USA, 21-25 March 2014

Patient adherence and non-persistence behaviour in real life actinic keratosis (AK) topical treatment in the UK, Germany and France
Erntoft S, Norlin J, Pollard C, Diepgen TL
Value in Health 2014, Volume 17, Issue 3, A287

Patient adherence and non-persistence behaviour in real life actinic keratosis (AK) topical treatment in the UK, Germany and France
Erntoft S, Norlin J, Pollard C, Diepgen TL
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 19th Annual International Congress, Montréal, Canada, 1-3 June 2014

Psychometric evaluation of a patient-reported treatment satisfaction measure for hyperfunctional facial lines in the upper face
Daniels S, Banderas B, Shields AL, Burgess S
Poster presented at the 72nd annual meeting of the American Academy of Dermatology. Denver, CO USA, 2014

Development of a new patient-reported outcome measure for facial acne: The Acne Symptom and Impact Scale (ASIS)
Alexis A, Daniels SR, Johnson N, Pompilus F, Burgess SM, Harper JC
J Drugs Dermatol 2014;13(3):333-340

The impact of upper facial lines and psychological impact of crow’s feet lines: Content validation of the Facial Line Outcomes (FLO-11) questionnaire
Yaworsky A, Daniels S, Tully S, Beddingfield F, Kowalski J, Fitzgerald K, Somogyi C, Burgess S
J Cosmet Dermatol 2014;13(4):297-306

In-depth Investigation of patient-reported sexual, reproductive, and relationship impacts of psoriasis
Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields A
Poster session presented at: 22nd Congress of the European Academy of Dermatology and Venereology, Istanbul, Turkey, October 2-6, 2013

In-depth Investigation of patient-reported sexual, reproductive, and relationship impacts of psoriasis
Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Foley C, Pompilus F, Shields A
Poster presented at the 22nd Annual European Academy of Dermatology and Venereology, Belgrade, Serbia, 2013

Is a picture worth a thousand words? The development of a clinician and patient reported photonumeric guide to assess scar severity
Pleil A, Jensen J, Galipeau N, Taylor F, Pompilus F, Shields AL
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Patients’ experiences with hidradenitis suppurativa:  A qualitative study of symptoms and impacts
Kimball AB, Sundaram M, Mukherjee Bal V, Okun M
Poster session presented at: 71st Annual Meeting of the Amercian Academy of Dermatology, Miami, Florida, March 1-5, 2013

Psychometric performance of a new patient-reported psoriasis symptom diary
Nyirady J, Mallya UG, Guettner A, Papavassilis C, Strober BE, Gottlieb AB, Lebwohl M, Gwaltney CJ, Turner-Bowker DM, Shields AL
Value in Health,16(6), 1014-1022

Content assessment of the Facial Line Outcomes (FLO-11) questionnaire (MT)
Fitzgerald K, Yaworsky A, Daniels S, Galipeau N, Kornstein A, Evans C, Misra-Burgess S
Qual Life Res 2012;20:66

Do scars impact beyond just appearance? A report of the concept elicitation phase in the development of the patient reported scar evaluation questionnaire
Pleil A, Jensen J, Galipeau N, Taylor F, Pompilus F, Shields AL
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Evaluating a measure of tanning abuse and dependence
Hillhouse J, Baker M, Turrisi R, Shields AL, Stapleton J, Jain S, Longacre I
Archives of Dermatology. 148(7):815-819

Development of an instrument mirroring patient and physician perception of psoriasis severity and treatment effect
De Climens R, Marant C, Arnould B, Thibout E
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Content and psychometric validity of the Eyelash Satisfaction Questionnaire (ESQ) in China
Crawford B, Tanaka E, Zhu Y, Burgess S M
Value Health 2010;13:A542

Item reduction and psychometric validation of the Oily Skin Self-Assessment Scale (OSSAS) and the Oily Skin Impact Scale (OSIS)
Arbuckle R, Clark M, Harness J, Bonner N, Scott J, Draelos Z, Rizer R, Yeh Y, Copley-Merriman K
Value Health 2009;12:828

Psychometric validation of the Oily Skin Self-Assessment Scale (OSSAS) and the Oily Skin Impact Scale (OSIS)
Mamolo C, Harness J, Bonner N, Arbuckle R
JAAD 2009;60:P715

Endocrinology and metabolic disorders

Patient perspectives on the burden of type 2 diabetes mellitus treatment
Yu-Isenberg K, Gray G, Foley C, Stokes J, Shields AL, Dickie G, Lamoureux R, Jackson C, Padilla B, Polonsky W
Poster presented at the American Diabetes Association’s 78th Scientific Sessions, Orlando, FL, USA, June 22-26, 2018.

Exploring the type 2 diabetes mellitus experience from the patient perspective
Yu-Isenberg K, Gray G, Foley C, Stokes J, Shields AL, Dickie G, Lamoureux R, Jackson C, Padilla B, Polonsky W
Poster presented at the American Diabetes Association’s 78th Scientific Sessions, Orlando, FL, USA, June 22-26, 2018.

Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018.

Insights into the effect of switching to insulin glargine 300 units/ml on HbA1c and daily basal insulin dosage in type 1 diabetes: A treatment-pattern web-based survey in the United Kingdom
Hodgson M, Perry R, Ali A, Price J
Poster presented at the Diabetes UK Professional Conference, London, UK 14-16 March 2018

Understanding the functional impact of movement disorders in glucose transporter type 1 seficiency syndrome (Glut1 DS)
Bowden A, Collins P, Blair S. Wedsock K, Haller M, Brandabur M, Hall R, Kilgariff S, Arbuckle R, Mayhew J, Skrinar A
Abstract submitted to 13th International Congress of Inborn Errors. Rio de Janiero, Brazil, 5-8 September, 2017

The functional impact of movement disorders symptoms in glucose transporter type 1 deficiency syndrome (Glut1 DS)
Bowden A, Kilgariff S, Hall R, Brandabur M, Collins P
Poster presented at: 5th International Symposium on Paediatric Movement Disorders, Barcelon, Spain, 2-3rd February

Development of a paroxysmal movement disorder diary for patients with glucose transporter type 1 deficiency syndrome (Glut1 DS)
Hall R, Kilgariff S, Collins P, Brandabur M, Arbuckle R, Bowden A
21st International Congress of Parkinson’s Disease & Movement Disorder, June 4-8, 2017 in Vancouver, BC

Psychometric validation of a patient-reported outcome questionnaire in patients with pancreatic exocrine insufficiency
Johnson C, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch M
Poster presented at the 49th Meeting of the European Pancreatic Club (EPC), 28 June 2017

Qualitative assessment of the symptoms and impact of pancreatic exocrine insufficiency (PEI) to inform the development of a patient-reported outcome (PRO) instrument
Johnson C D, Arbuckle R, Bonner N, Connett G, Dominguez-Munoz E, Levy P, Staab D, Williamson N, Lerch M M
Patient. 2017; 10(5): 615–628

Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J.
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Patient preference for once-weekly dosing in type 2 diabetes mellitus in Japan
Sen R, Shields AL, Atsuda K
Journal of Health Economics and Outcomes Research, 4(1), 55-66

Clinician-reported insights of insulin degludec use in Germany and four supporting European countries
Seitz L, Lopes S, Vandebrouck T, Parekh WA, Canty E, Robinson A, Ohlson L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Development of a patient-reported outcome measure in pancreatic exocrine insufficiency (PEI)
Johnson C, Arbuckle R, Bonner N, Connet G, Dominguez-Munoz E, Haeusler J, Levy P, Platon J, Schifflers M, Staab D, Williamson N, Lerch M
Poster presented at: European Pancreatic Club, Spain, June 2015

Qualitative research to better understand the experience of pancreatic exocrine insufficiency (PEI) symptoms from the patient perspective
Bonner N, Tolley C, Williamson N, Arbuckle R, Platon J, Haeusler J, Schifflers M
Poster presented at European Pancreatic Club, Southampton, June 2014

Perceptions of usability and design for prefilled insulin delivery devices for patients with type 2 diabetes
Heron L, Reaney M, Hermanns N, Abetz L, Gregg L
Diabetes Spectr Winter 2013;26:16

Utilization pattern and healthcare resource evaluation of Japanese insulin initiators during their first year
Ikeda S, Yeung CK, Sato M, Crawford B
Presentation at the 8th Asian Annual Conference on Pharmacoepidemiology, Hong Kong, China, 25 – 27 October 2013

A conceptual model for binge eating disorder based on literature review, expert insights, and patient interviews
Supina D, Shields AL, Stokes J, Taylor F, Pompilus F, Delbecque L, Erder MH
Poster session presented at: Eating Disorders Research Society, 18th Annual Meeting, Porto, Portugal, 20-22 September 2012

Content validity of the PedsQL™ 3.2 diabetes module in newly diagnosed patients with type 1 diabetes mellitus ages 8-45
Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA
Qual Life Res. 2012; 22(8):2169-81

Development and validation of patient reported endpoints for T2DM
Bron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous O
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 15th Annual European Congress, Berlin, Germany, 3-7 November 2012

Development and validation of patient-reported endpoints for T2DM
Bron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous O
Value Health 2012;15:A503

The effects of household food production strategies on the health and nutrition outcomes of women and young children: a systematic review
Girard AW, Self JL, McAuliffe C, Olude O
Paediatr Perinat Epidemiol 2012;26:205-22

Economic models in type 2 diabetes
Yi Y, Philips Z, Bergman G, Burslem K
Current Medical Research & Opinion 2010; 26 (9): 2105–2118

Psychometric evaluation of the Diabetes Symptom Checklist-Revised (DSC-R) – A measure of symptom distress
Arbuckle RA, Humphrey L, Vardeva K, Arondekar B, Danten-Viala M, Scott JA, Snoek FJ
Value Health 2009;12:1168

Gastrointestinal diseases

Development of a symptom-focused patient-reported outcome measure for functional dyspepsia: The Functional Dyspepsia Symptom Diary (FDSD)
Fiona Taylor, Sophie Higgins, Robyn T Carson, Sonya Eremenco, Catherine Foley, Brian E Lacy, Henry P Parkman, David S Reasner, Alan L Shields, Jan Tack and Nicholas J Talley
American Journal of Gastroenterology

Understanding the barriers to vaccine access and uptake in EU5: Rotavirus vaccination case study
Collings H, Fadeyi I, Tavella F, Heron L
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Diarrhea-predominant irritable bowel syndrome: creation of an electronic version of a patient reported outcome instrument by conversion from a pen-and-paper version and evaluation of their equivalence
Delgado-Herrera L, Banderas B, Ojo O, Kothari R, Zeiher B
Patient Related Outcome Measures

Evaluation and performance of a newly developed patient-reported outcome instrument for diarrhea predominant irritable bowel syndrome in a clinical study population
Delgado-Herrera L, Lasch K, Zeiher B, Lembo AJ, Drossman DA, Banderas B, Lademacher C, Arbuckle R.
Therapeutic Advances in Gastroenterology

Cultural adaptation: translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrhea
Delgado-Herrera L, Lasch, K, Popielnicki A, Nishida A, Arbuckle R, Banderas B, Zentner S, Gagainis I, Zeiher B
Patient Related Outcome Measures, 2016:7 81–92

Functional Dyspepsia Working Group
Carson R, Shiff SJ, Reasner D, Hanlon J, Lacy BE, Parkman HP, Tack J, Talley N, Shields A, Taylor F, Foley C, Daggett M, Higgins S, Bodart S
Poster presented as the Seventh Annual PRO Consortium Workshop – Silver Spring, MD – April 27-28, 2016

Development of a symptom-based patient-reported outcome instrument for functional dyspepsia: A preliminary conceptual model and an evaluation of the adequacy of existing instruments
Taylor F, Reasner DS, Carson RT, Deal LS, Foley C, Iovin R, Lundy JJ, Pompilus F, Shields AL, Silberg D, on behalf of the Patient-Reported Outcome Consortium’s Functional Dyspepsia Working Group
The Patient-Patient Centered Outcomes Research (2016) 9: 409. DOI 10.1007/s40271-016-0164-1.

Practical considerations for the use of clinical outcome assessments (COAs) in pediatric clinical research: Examples from pediatric gastroenterology
Kovacs S, Turner-Bowker DM, Calarco G, Mulberg A, Paty J
Therapeutic Innovation & Regulatory Science 2016, Vol. 50(1) 37-43

Assessing gas-related symptoms and their associated impact on the daily life of the general population and irritable bowel syndrome patients: international development of a questionnaire – qualitative steps
Tugaut B, Guyonnet D, Arbuckle R, Azpiroz F, Chassany O, Whorwell P, Marrel A
Value Health;15:A332

Development of a conceptual model evaluating the humanistic and economic burden of Crohn’s disease: implications for patient-reported outcomes measurement and economic evaluation
Gater A, Kitchen H, Heron L, Pollard C, Håkan-Bloch J, Højbjerre L, Bekker Hansen B, Strandberg-Larsen M
Expert Rev Pharmacoecon Outcomes Res 2015, 15(4):643-56

Functional Dyspepsia Working Group
Carson R, Shiff SJ, Reasner D, Hanlon J, Deal L, Silberg DF, Lacy BE, Parkman HP, Tack J, Talley N, Shields A, Taylor F, Pompilus F, Foley C, Daggett M
Poster presented as the  Sixth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 2015

The Intestinal Gas Questionnaire: Development of a new instrument for measuring gas-related symptoms and their impact on daily life
Chassany O, Tugaut B, Marrel A, Guyonnet D, Arbuckle R, Duracinsky M, Whorwell PJ, Azpiroz F
Neurogastroenterol. Motil., 27: 885–898. doi:10.1111/nmo.12565

Translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrhea (IBS-D PRO)
Popielnicki A, Arbuckle R, Banderas B, Delgado-Herrera L, Gagainis I, Lasch K, Nishida A, Zeiher B, Zentner S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Functional Dyspepsia Working Group
Carson R, Shiff SJ, Witherspoon B, Belanger V, Deal L, Silberg DF, Shields A, Taylor F, Pompilus F, Foley C, Iovin R, Daggett M
Poster presented at the Fifth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 2014

Measuring the symptoms of pediatric constipation and irritable bowel syndrome with constipation: Expert commentary and literature review
Arbuckle R, Carson R, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis B, Gargon E et al
Patient (2014) 7:343-364

Agreement between child and parent symptom diary responses in Chronic Constipation (CC) and Irritable Bowel Syndrome with Constipation (IBS-C): Implications for the measurement of symptoms in young children
Holloway L, Arbuckle R, Carson RT, Dennee-Sommers B, Abetz-Webb L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR),  16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Exploring the humanistic and economic burden of Crohn’s disease: Considerations for novel compounds
Hansen BB, Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Højbjerre L, Strandberg-Larsen M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Functional Dyspepsia Working Group
Carson R, Shiff SJ, Dennee-Sommers B, Gordon G, Deal L, Silberg DF, Shields A, Taylor F, Pompilus F, Foley C, Iovin R, Daggett M
Poster presented at the Fourth Annual PRO Consortium Workshop – Silver Spring, MD – April 24-25, 2013

Assessing gas-related symptoms and their associated impact on the daily life of the general population and irritable bowel syndrome patients: International development of a questionnaire – qualitative steps
Tugaut B, Guyonnet D, Arbuckle R, Azpiroz F, Chassany O, Whorwell P, Marrel A
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Exploring the humanistic and economic burden of Crohn’s disease: Considerations for novel compounds
Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Hansen BB, Højbjerre L, Strandberg-Larsen M
Poster presented at: Advances in Inflammatory Bowel Diseases Crohn’s & Colitis Foundation’s National Clinical & Research Conference, Hollywood, Florida, December 13-15, 2012

Exploring the humanistic and economic burden of Crohn’s disease: Considerations for novel compounds
Hansen BB, Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Højbjerre L, Strandberg-Larsen M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

The impact of chronic constipation (CC) on children and adolescents: results from qualitative research (FR)
Arbuckle R A, Abetz L, Carson R T, Baird M J, Shiff,S J, Johnson J M, Bonner N
Qual Life Res 2012;20:59

The impact of irritable bowel syndrome with constipation (IBS-C) on children and adolescents: Results from qualitative research (FR)
Bonner N, Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff,S J, Johnson J M
Qual Life Res 2012;20:97

IBS-C patient symptom reports: analysis of exploratory open-ended questions
Carson R T, Lewis B E, Shiff S J, Johnston J M, Dennee-Sommers B, Lasch K, Hwang S, Marquis P
Value in Health 2011;14:A183

Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): Results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston J M
Value Health 2010;13:A373

Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): Results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston JM
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Development of a pediatric chronic constipation symptom measure: Results of qualitative interviews with children and their parents
Abetz L, Arbuckle R, Carson R, Lewis B, Hunter L J, Shiff S J, Johnston J
Qual Life Res 2010;19:141

Development of pediatric irritable bowel syndrome with constipation measures: Results of qualitative interviews with children and their primary caregivers
Lewis B E, Arbuckle R, Abetz L, Carson R, Pompilus F, Johnston J, Shiff S
Poster session presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21-23 October 2010

Symptoms of pediatric chronic constipation: Results of qualitative interviews with children and their primary caregivers
Carson RT, Abetz LN, Arbuckle R A, Lewis B, Bonner N, Shiff S, Johnston J
Poster presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21–23 October 2010

The symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): Results of qualitative interviews with children and their parents
Carson R, Arbuckle R, Abetz L, Lewis BE, Hunter L J, Johnston J, Shiff S J
Qual Life Res 2010;19:6

Genetic diseases

Cognitive debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA)
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018.

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018.

Understanding the life experience of Barth syndrome from the perspective of older individuals
Usmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen R
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018.

Characterization of patients with galactosialidosis and sialidosis type I
Cimms T, Ali Q A, Kilgariff S, Johnson C, Arbuckle R, Malkus B, Schatz A, Haller C
Poster presentation at the 13th International Congress of Inborn Errors, 5-8 September 2017

Cognitive debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA)
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USA

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Cognitive debriefing of the Primary Mitochondrial Myopathy – Symptom Assessment (PMM-SA)
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USA

Exploring and documenting the signs, symptoms, and impacts of primary mitochondrial disesase
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz-Webb L, Renault L, Caballero T, Longhurst H, Maurer M, Christiansen S, Zuraw B and for the Icatibant Outcome Survey (IOS) International Executive Committee and the Hereditary Angioedema Association (HAEA) Medical Advisory Board
Health Qual Life Outcomes. 2015, 13:92

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T
Value Health 2012;15:A558

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Haematology

HaemoPREF: Further evaluation of patient perception and preference for treatment in a real world setting
Bonanad S, Schulz M, Gordo A, Spurden D, Cicchetti M, Cappelleri JC, Tolley C, Staunton H, Brohan E
Haemophilia. 2017; 23: 884-893

Evaluating patient preference for haemophilia A treatment
Schulz M, Gordo A, Tolley C, Staunton H, Brohan E, Spurden D, Cicchetti M, Cappelleri JC
Presented at the 2017 EAHAD Annual Congress, February 1-3 2017, Paris, France

Cognitive testing of an electronic version of the Faces Pain Scale-Revised with pediatric and adolescent sickle cell patients
Gupta N, Naegeli AN, Turner-Bowker DM, Flood EM, Heath LE, Mays SM, Dampier C
Patient. 2016 Mar 30. [Epub ahead of print]

Further validation of the haemopref in a real-world setting
Tolley C, Staunton H, Brohan E, Spurden D, Cicchetti M, Cappelleri JC
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Development and psychometric evaluation of a novel tool for assessing patient perception and preference for haemophilia treatment (HaemoPREF)
Teal S, Brohan E, Hettema Y, Humphrey L, Willgoss T, Hudgens S, Westfeld M, Cappelleri J
Haemophilia, 2014;20:(5):666-673

HaemoPREF: A novel questionnaire for evaluating patient perception and preference for haemophilia A treatment
Teal S, Brohan E, Marshall C, Tolley C, Schulz M, Westfeld M, Cappelleri JC
Poster session presented at: EAHAD 16th Annual European Congress, Brussels, Belgium, 26–28 February 2014

Item refinement and psychometric testing of a novel survey for evaluating patient perception and preference for haemophilia A treatment
Teal SA, Brohan E, Hettema Y, Humphrey L, Willgoss T, Hudgens S, Westfeld M, Cappelleri JC
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Systematic review of the practice patterns and burden among patients with hemophilia in Japan
Wada K, Crawford B, Lee CW, Krishnan S
Poster session presented at: International Society of Thrombosis and Haemostasis, 14th International Congress, Amsterdam, Netherlands, 29 June-July 4 2013

Haemophilia B: impact on patients and economic burden of disease
Gater A, Thomson TA, Strandberg-Larsen M
Thromb Haemost. 2011 Sep;106(3):398-404. Epub 2011 Aug 11. Review

Hemophilia A: patient impact and economic burden of the disease
Strandberg-Larsen M, Gater A, Thomson A
Value Health 2011;14:A64

An instrument assessing satisfaction with iron chelation therapy: Psychometric testing from an open-label clinical trial
Rofail D, Viala M, Gater A, Abetz-Webb L, Baladi JF, Cappellini MD
Adv Ther. 2010 Aug;27(8):533-46. Epub 2010 Jul 20

Improved patient satisfaction, adherence and health-related quality of life with deferasirox (Exjade®) in β-thalassemia patients previously receiving other iron chelation therapies
Porter JB, Athanasiou-Metaxa M, Bowden DK, Troncy J, Habr D, Domokos G, Roubert B, Rofail D, Gater A, Baladi JF, Cappellini MD
Poster session presented at: 51st Annual Meeting of the American Society for Hematology, New Orleans, USA, 5–8 December 2009

Satisfaction and adherence in patients with iron overload receiving iron chelation therapy as assessed by a newly developed patient instrument
Rofail D, Abetz L, Viala M, Gait C, Baladi J F, Payne K
Value Health 2009;12:109

Satisfaction with iron chelation therapy is associated with improved quality of life in patients with iron overload
Rofail D, Abetz A, Gater A, Baladi JF
Presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 11th Annual Congress, Athens, 8–11 November 2008

Infectious diseases

Physician practices and perceived barriers concerning adult vaccination of patients with Medicare versus commercial insurance
McNamara M, Buck P, Yan S, Friedland LR, Lerch K, Murphy A, Turner-Bowker DM, Taylor F, Lamoureux R, Klooster B, Hogea C
Presented at the 48th National Immunization Conference, Atlanta, GA, 15-18 May 2018

Simeprevir added to peginterferon and ribavirin lessens time with fatigue, depressive symptoms and functional limitations in patients with chronic hepatitis C compared with peginterferon and ribavirin: results from 1161 patients in the QUEST-1, QUEST-2 and PROMISE studies
Scott J, Gilles L, Fu M, Brohan E, Panter C, Arbuckle R, Jessner W, Beumont M
J Viral Hepat 2015;22(8):639-50

The humanistic, economic and societal burden of herpes zoster in Europe: A critical review
Gater A, Uhart M, McCool R, Préaud E
BMC Public Health 2015, 15:193

Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: Findings from the zoster quality of life study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Value Health;15:A514

Burden of herpes zoster in the UK: Findings from the Zoster Quality of Life (ZQOL) study
Gater A, Abetz-Webb L, Carroll S, Mannan A, Serpell M, Johnson R
BMC Infect Dis. 2014 Jul 20;14:402

Burden of post-herpetic neuralgia in a sample of UK residents aged 50 years or older: Findings from the Zoster Quality of Life (ZQOL) study
Serpell M, Gater A, Carroll S, Abetz-Webb L, Mannan A, Johnson R
Health Qual Life Outcomes. 2014 Jun 11;12:92

Real world studies using Japanese administrative databases:  Chronic hepatitis C treatment pattern and resource use
Crawford B, Tang A, Li H, Burns L, Wada K, McDonald J
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

The secondary care cost burden to the NHS associated with the 2012 pertussis outbreak in England
Holbrook T, Coles V, Carroll S, Pollard C, Oakley S
Poster session presented at: 32nd Annual Meeting of  the European Society for Paediatric Infectious Diseases, Dublin, Ireland, May 6-10 2014

Challenges in quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: Learnings from the Zoster Quality of Life (ZQOL) study
Carroll S, Gater A, Abetz-Webb L, Smith F, Demuth D, Mannan A
BMC Research Notes 2013, Nov 25;6:486

Fatigue severity scale: Reliability, validity and interpretation of change – evidence from two clinical trials in patients with chronic HCV infection
Scott J, Rosa K, Fu M, Cerri K, Peeters M, Beumont-Mauviel M, Gilles L, Blackburn S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Herpes zoster in Europe: A review of evidence documenting humanistic, economic and societal burden
McCool R, Gater A, Préaud E, Baron-Papillon F, Largeron N
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Interviews with patients with chronic hepatitis C virus infection document unmet needs, content validity, and comprehension of PROs for clinical trials
Blackburn S, McCool R, Panter C, Young V, Peterson S, Mitchell L, Machouf N, Scott J, Humphrey L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Patients with chronic hepatitis C virus treated with simeprevir added to peginterferon and ribavirin experienced less time with fatigue, depressive symptoms, and functional limitations: results from patients in the quest-1, quest-2, and promise studies
Scott J, Gilles L, Fu M, Brohan E, Amatya R, Jessner W, Beumont-Mauviel
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Hepatitis C in Asia: Prevalence and complications
Crawford B, Tanaka E, Yeung CK, Hwang S, Leteneux C, Kraemer M, Wang YJ, Chanatitarat C
Poster session presented at: Asian Pacific Association for the Study of the Liver conference, Taipei, Taiwan, 17–19 February 2012

Hepatitis C virus in Asia: Utility values based on the Short Form-36 Questionnaire (SF-36)
Crawford B, Yeung CK, Tanaka E, Kraemer M, Leteneux C
Expert Review of Pharmacoeconomics and Outcomes Research 2012;12:765-773

Interviews with patients with chronic hepatitis C (CHC) virus infection document unmet needs, content validity, and comprehension of PROs for clinical trials
Blackburn S, McCool R, Panter C, Young V, Peterson S, Mitchell L, Machouf N, Scott J, Humphrey L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: findings from the zoster quality of life study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Burden of herpes zoster and post-herpetic neuralgia: Findings from a cross-sectional patient reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Burden of herpes zoster and post-herpetic neuralgia: Findings from a cross-sectional patient-reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Value Health 2011;14:A405

Burden of herpes zoster and post-herpetic neuralgia: Findings from a cross-sectional patient-reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Poster session presented at: British Geriatrics Society Autumn Meeting, Brighton, UK, 12–14 October 2011

Burden of herpes zoster and post-herpetic neuralgia: Interim findings from a cross-sectional, patient-reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Poster session presented at: British Pain Society Annual Scientific Meeting, Edinburgh, Scotland, 21–24 June 2011

Herpes zoster and post-herpetic neuralgia: Considerations for a prospective, cross-sectional, patient reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Value Health 2010;13:A441

Herpes zoster and post-herpetic neuralgia: Considerations for a prospective, cross-sectional, patient reported outcomes study
Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Impact of MMRV mass vaccination with or without a catch up program on the incidence of varicella complications in France
Ouwens M, Littlewood K, Sauboin C, Tehard B, Alain S, Denis F, Boelle PY
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: practical considerations
Gater A, Carroll S, Abetz L, Demuth D, Smith F, Mannan A
Qual Life Res 2010;19:123

Musculoskeletal diseases

Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scale
Mayhew J, Bonner N, Arbuckle R, Turnbull A, Bowden A, Skrinar A
Journal of Comparative Effectiveness Research. 2017;

Development of the Rheumatoid Arthritis Symptom Questionnaire (RASQ): A patient reported outcome scale for measuring symptoms of rheumatoid arthritis
Banderas B, Skup M, Shields AL, Mazar I, Ganguli A
Current Medical Research Opinion

Psychometric evaluation of the Rheumatoid Arthritis Symptom Questionnaire (RASQ) in an observational study
Banderas B, Skup M, Shields AL, Stokes J, Foley C, Ganguli A
Current Medical Research Opinion

“I am always in pain somewhere”: Continuing unmet need in rheumatoid arthritis
Taylor P, Alten R, Gomez-Reino JJ, Caporali R, Bertin P, Grant L, Brohan E, Wells J, Vasilescu R, Tarallo M
Poster presented at the American College of Rheumatology Annual Meeting, Washington DC, USA, 14 November 2016

Mode of administration in rheumatoid arthritis treatments: An exploration of patient preference for an ‘Ideal Treatment’
Taylor P, Alten R, Gomez-Reino JJ, Caporali R, Bertin P, Grant L, Brohan E, Wells J, Vasilescu R, Tarallo M
Poster presented at the American College of Rheumatology Annual Meeting, Washington DC, USA, 15 November 2016

Patient preference for electronic patient- reported outcomes (PROs):  Assessment in patients with psoriatic arthritis (PsA)
Elash CA, Tiplady B, Turner-Bowker DM, Cline J, DeRosa M,  Scanlon M
Poster presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016

What outcomes are important for gout patients? In-depth qualitative research into the gout patient experience to determine optimal endpoints for evaluating therapeutic interventions
Tatlock S, Rudell K, Panter C, Arbuckle R, Harrold L, Taylor W, Symonds T
Patient (2016). doi:10.1007/s40271-016-0184-x

Equivalence of paper and electronic administration of patient reported outcomes: a comparison in psoriatic arthritis
Celeste Elash CA, Tiplady B, Turner-Bowker DM, Cline J, DeRosa M, Scanlon M
Podium presentation at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Assessing the methodological value of digital real-time collection of qualitative content in supporting in-depth qualitative interviews exploring the symptoms and impacts of gout on health-related quality of life
Rudell K, Tatlock S, Panter C, Arbuckle R, Symonds T
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Cost-effectiveness of modified-release prednisone in the treatment of moderate to severe rheumatoid arthritis with morning stiffness based on directly elicited public preference values
Dunlop W, Iqbal I, Khan I, Ouwens M, Heron L
Clinic Econ Outcomes 2013;5:555-564

Evaluating fatigue in fibromyalgia: development and validation of the daily Diary of Fatigue Symptoms in Fibromyalgia (DFS-Fibro)
Burbridge C, Symonds T, Humphrey L, Arbuckle R, Hirsch I, Whelan L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Development of a questionnaire to assess the impact of chronic low back pain for use in regulated clinical trials
Stokes J, Evans CJ, Pompilus F, Shields AL, Summers KH
Patient 2013; Dec;6(4):291-305

Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthiritis
Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C
J Med Econ 2012;15:1192

Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritis
Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C
Poster session presented at: British Society for Rheumatology, Glasgow, Scotland, 3 May 2012

Using clinical outcome assessments and economic data to facilitate patient access in rheumatoid arthritis
Gater A, Kitchen H, Heron L, Hansen BB, Højbjerre L, Strandberg-Larsen M
Value Health 2012;15:A484

Using clinical outcome assessments and economic data to facilitate patient access in rheumatoid arthritis
Gater A, Kitchen H, Heron L, Hansen BB, Højbjerre L, Strandberg-Larsen M
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Assessing fibromyalgia-related fatigue: content validity and psychometric performance of the Fatigue Visual Analog Scale in adult patients with fibromyalgia
Crawford B, Piault EC, Lai C, Bennett RM
Clin Exp Rheumatol 2011;29:S34

Assessing sleep in fibromyalgia: investigation of an alternative scoring method for the Jenkins sleep scale based on data from randomized controlled studies
Crawford B, Piault E, Lai C, Sarzi-Puttini P
Clin Exp Rheumatol 2010;28:S100

Fatigue in fibromyalgia: a conceptual model informed by patient interviews
Humphrey L, Arbuckle R, Mease P, Williams D, Samsoe B D, Gilbert C
BMC Musculoskelet Disord 2010;11:216

Indirect treatment comparison to compare efficacy in Health Assessment questionnaire (HAQ) score for biologic agents with methotrexate in patients with RA and active disease despite methotrexate therapy
Guyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman G
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

The cost-effectiveness of Abatacept in combination with methotrexate for the treatment of patient with active RA after an inadequate response to methotrexate in the UK
Guyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman G
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Fibromyalgia fatigue – The development of a conceptual model based on qualitative patient interviews
Mease P, Humphrey L, Arbuckle R, Williams DA, Danneskiold-Samsoe B, Gilbert C
Value Health 2009;12:A232

Fibromyalgia fatigue – The development of a conceptual model based on qualitative patient interviews
Mease P, Humphrey L, Arbuckle R, Williams D A, Danneskiold-Samsøe B, Gilbert C
Ann Rheum Dis 2009;68:759

Use of “spydergrams” to present and interpret SF-36 health-related quality of life data across rheumatic diseases
Strand V, Crawford B, Singh J, Choy E, Smolen JS, Khanna D
Ann Rheum Dis 2009;68:1800

Oncology

Cost-effectiveness analysis of a HMGA2 prognostic test for acute myeloid leukaemia in a Canadian setting
Tremblay G, Rousseau B, Marquis M, Beaubois C, Sauvageau G, Hébert J
Appl Health Econ Health Policy (2019)

Economic evaluations of subcutaneously administered oncology therapies: A health technology assessment (HTA) landscape review
Wu E, Schenkel B, Povsic M, Wyn R, Hernani M, Kornalska K
Poster presented at ISPOR, 20-22 May 2019, New Orleans, USA

Budget projections and health impact of the PD-1/PD-L1 inhibitors to inform budget planning – the experience from four European countries
Roediger A, van Bavel J, Pellissier J, Lucherini S, Davies N, Okhuoya P, Rachev B
Poster presenter at the HTAi conference, 15-19 June 2019, Cologne, Germany

Real-world effectiveness and tolerability of small-cell lung cancer (SCLC) treatments: A systematic literature review (SLR)
Povsic M, Enstone A, Wyn R, Kornalska K, Penrod JR, Yuan Y
Poster presented at ISPOR, 12-14 November 2018, Barcelona, Spain

Health status in patients with SCLC treated with nivolumab alone or combined with ipilimumab: CheckMate 032Understanding the patient perspective of small cell lung cancer
Rydén A, Ollis S, Love E, Shields AL, Jiang H, Dennis PA
Poster presented at the 8th European Lung Cancer Congress, Geneva, Switzerland 11-14 April 2018

Ardizzoni A, Farago AF, Atmaca A, Calvo E, Taylor F, Bennett B, Selvaggi G, Pieters A, Penrod JR, Yuan Y, Ross Camidge D
Poster presented at the 18th World Conference on Lung Cancer of the International Association for the Study of Lung Cancer (IASLC); Yokohama, Japan, 15-18 October, 2017

The humanistic burden of small cell lung cancer (SCLC): A systematic review of health-related quality of life (HRQoL) literature
Bennett B M, Wells J R, Panter C, Yuan Y, Penrod J R.
Front Pharmacol. 2017 Jun 15;8:339.

Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: Qualitative patient interviews
Cella D, Dillard S, Galipeau N, Higgins S, Klooster B, Krohe M, Revicki D, Tang D, Small T
24th Annual Conference of the International Society for Quality of Life Research

Patient-reported outcomes in DNA mismatch repair deficient/microsatellite instability high metastatic colorectal cancer treated with nivolumab: CheckMate 142
Overman M, Kamble S, Moss R, Taylor F, Maglinte G, Shaw J, Cocks K, Mann E, Yip C, Andre T
Poster presented at the ESMO 19th World Congress on Gastrointestinal Cancer, 28 June 2017

Understanding the symptoms, impacts and treatment side-effects of advanced bladder cancer from the perspective of the literature, clinicians, and patients
Degboe A, Banderas B, Halling K, Mazar I, Mann E
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Association of health-related quality of life and healthcare resource utilization in CheckMate 141, a phase 3 study of nivolumab versus investigator’s choice in patients with recurrent or metastatic platinum-refractory squamous cell carcinoma of the head and neck
DeRosa M, Cocks K, Korytowsky B, Contente M, Taylor F, Shaw JW
Poster submitted to the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November.

Analyses of healthcare resource use (HCRU) in Checkmate 141, a phase III study of nivolumab versus therapy of investigator’s choice (IC) in patients with recurrent or metastatic (R/M) platinum-refractory squamous cell carcinoma of the head and neck (SCCHN)
DeRosa M, Cocks K, Taylor F, Bobiak S, Juarez Garcia A, Shaw JW.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, US, 20-24 May 2017

Effect of nivolumab on patient-reported outcomes in patients with relapsed/refractory classical Hodgkin lymphoma after autologous hematopoietic cell transplantation: Results from the multicohort phase 2 CheckMate 205 study
Engert A, Taylor F, Bennett B, Chen C, Cocks K, McDonald J, Mann E, Sacchi M, Cella D
Presented at 59th American Society of Hematology (ASH) Annual Meeting and Exposition

Nivolumab versus investigator’s choice therapy among patients with human papillomavirus-associated squamous cell carcinoma of the head and neck: Updated results from CheckMate 141
Gillison ML, Harrington K, Ferris RL, Guigay J, Blumenschein G, Jr., Fayette J, Colevas AD, Kiyota N, Shaw JW, Monga M, Lynch M, Taylor F, DeRosa M, Morrissey L, Cocks K, Saba NF
AHNS Annual Meeting

Living with the burden of relapse in multiple myeloma from the patient and physician perspective
Hulin C, Hansen T, Heron L, Pughe R, Streetly M, Plate A, Perkins S, Morgan K, Tinel A, Rodrigues F, Ramasamy K
Leukaemia Research 59 (2017) 75-84

Nivolumab versus standard, single-agent therapy of investigator’s choice in recurrent or metastatic squamous cell carcinoma of the head and neck (CheckMate 141): Health-related quality-of-life results from a randomised, phase 3 trial
Harrington KJ, Ferris RL, Blumenschein G Jr, Colevas AD, Fayette J, Licitra L, Kasper S, Even C, Vokes EE, Worden F, Saba NF, Kiyota N, Haddad R, Tahara M, Grünwald V, Shaw JW, Monga M, Lynch M, Taylor F, DeRosa M, Morrissey L, Cocks K, Gillison ML, Guigay J
Lancet Oncology

Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: Literature review and expert interviews
Krohe M, Tolley C, Higgins S, Cella D, Revicki D, Small T, Tang D
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Market access challenges to PD-1 immunotherapies: Lessons from NICE
McLean T, Tavella F, Heron L
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Health-related quality of life as a marker of treatment benefit with nivolumab in platinum-refractory patients with metastatic or unresectable urothelial carcinoma from CheckMate 275
Necchi A, Grimm M, Retz M, Arranz JA, Bracarda S, Bedke J, Baron A, Sharma P, Galsky MD, Vaena D, Kalinka-Warzocha E, Cwikiel M, Pal SK, Morales-Barrera R, Taylor F, Gooden KM, Plimack ER
American Society of Clinical Oncology

Assessing the comparability of paper and electronic versions of the EORTC QOL module for head and neck cancer: A qualitative study
Norquist J, Chirovsky D, Munshi T, Tolley C, Panter C, Gater A.
JMIR Cancer. 2017 May 12;3(1):e7

Patient-reported outcomes in DNA mismatch repair deficient/ microsatellite instability-high metastatic colorectal cancer treated with nivolumab: CheckMate 142
Overman M, Kamble S, Moss RA, Taylor F, Maglinte GA, Shaw JW, Cocks K, Mann E, Yip C, André T
19th World Congress on Gastrointestinal Cancer

Predicting EQ-5D utility index scores for gastric cancer patients in Japan: A preliminary model
Pike J, Maglinte GA, Rider A, Cocks K, Taylor F, Contente M, Calvo E
Poster submitted to the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November.

Validation of two cancer care plan communication tools
Staunton H, Yagnik S, Williamson N, Spencer H, Kaur S, Bennett B, Donelson S, Jagun D, Goertz H, Stein A
Presented at the ASCO Quality of Care Symposium, March 3rd-4th, Florida, 2017

Working together to foster better patient-centred cancer care: “Setting international standards in analysing patient-reported outcomes and quality of life endpoints data”
Oliver K, Peuters C, on behalf of the SISAQOL Consortium
Patient Advocacy Lounge at the British Neuro-Oncology Society (BNOS) annual conference, 21 June 2017

Health-related quality of life results from the phase III CheckMate 067 study
Schadendorf D, Larkin J, Wolchok J, Hodi FS, Chiarion-Sileni V, Gonzalez R, Rutkowski P, Grob JJ, Cowey CL, Lao C, Wagstaff J, Callahan MK, Postow MA, Smylie M, Ferrucci PF, Dummer R, Hill A, Taylor F, Sabater J, Walker D, Kotapati S, Abernethy A, Long GV
European Journal of Cancer

A quality-adjusted time without symptoms of disease and toxicity (Q-TWIST) analysis comparing nivolumab and therapy of investigator’s choice (IC) in patients with recurrent or metastatic (R/M) platinum-refractory squamous cell carcinoma of the head and neck (SCCHN) (CheckMate 141)
Simpson S, Cocks K, Korytowski B, Contente M, DeRosa M, Taylor F, Shaw JW.
Poster submitted to the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November.

Cognitive debriefing of the Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF)
Taylor F, Kreil S, Reiter A, Horny HP, Evans E, Mazar I, McNamara P, Boral A, Lamoureux RE, Shields A, Gotlib J
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

A structured review of health utility measures and elicitation in advanced/metastatic breast cancer
Hao Y, Wolfram V, Cook J
ClinicoEconomics and Outcomes Research, vol. 2016:8, 293—303. June 2016

Developing a small cell lung cancer conceptual model to inform treatment outcome and assessment strategy decisions in clinical research
Ojo O, Shields AL, Morrissey L, Love E, Ollis S, Halling K, Rudell K
Poster to be presented at the 19th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Vienna, Austria, 29th Oct-2nd Nov 2016

Development and content validity of the advanced systemic mastocytosis symptom assessment form (ADVSM-SAF)
Mazar I, Evans E, Taylor F, Patki A, Ojo O, Lamoureux RE, Horny H, Reiter A, Gotlib J, Shields A
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Clinical trial patient-reported outcomes data: Going beyond the label in oncology
Hao Y, Krohe M, Yaworsky A, Shields AL, Mazar I, Foley C, Globe D
Clinical Therapeutics (2016) 38(4):811-20.

Evidence for the content validity of the EORTC QLQ-C30: Review of existing data
Cocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson C
Qual Life Res 25, 1, ab303.4, 2016

Evidence for the content validity of the EORTC QLQ-C30: Review of existing data
Cocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson C
Podium presentation at International Society for Quality of Life Research (ISOQOL), 22 October 2016

Lung Cancer Symptom Scale (LCSS) as a marker of treatment (tx) benefit with nivolumab (nivo) vs docetaxel (doc) in patients (pts) with advanced (adv) non-squamous (NSQ) NSCLC from CheckMate 057
Gralla RJ, Spigel DR, Bennett B, Taylor F, Penrod JR, DeRosa M, Reck M
Poster presented at: American Society of Clinical Oncology (ASCO),  Chicago, Illinois, Jun 3-7, 2016

Lung Cancer Symptom Scale (LCSS) as a marker of treatment (tx) benefit with nivolumab (nivo) vs docetaxel (doc) in patients (pts) with advanced (adv) non-squamous (NSQ) NSCLC from CheckMate 057
Gralla RJ, Spigel DR, Bennett B, Taylor F, Penrod JR, DeRosa M, Reck M
Journal of Clinical Oncology 34, 2016

Overall survival, health-related quality of life, and healthcare resource use: independent analyses from checkmate 025, a phase iii study of nivolumab versus everolimus in patients with advanced or metastatic clear-cell renal cell carcinoma
Taylor F, Dastani H, Bennett B, DeRosa M, Berghorn E, Justin D
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Overall survival, health-related quality of life, and healthcare resource use: independent analyses from checkmate 025, a phase iii study of nivolumab versus everolimus in patients with advanced or metastatic clear-cell renal cell carcinoma
Taylor F, Dastani H, Bennett B, DeRosa M, Berghorn E, Justin D
Value in Health, 19(3), A167

Patient subgroup analyses of quality of life outcomes in Checkmate 205. A phase 2 study of nivolumab in patients with classical Hodgkin lymphoma
Engert A, Taylor F, Bennett B, Hirji I, Cocks K, McDonald J, Mann E, Kato K, Cella D
Poster presented at: American Society of Hematology (ASH), San Diego California, December 3-6, 2016

Patient-reported outcomes for oncology product labeling in the US: Developing a rationale and navigating early challenges
Shields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud F
American Health & Drug Benefits, 9(4):188-197

Patient-reported outcomes in advanced breast cancer: A review of industry sponsored clinical trials
Krohe M, Hao Y, Lamoureux R, Galipeau N, Globe D, Foley C, Mazar I, Solomon J, Shields AL
Breast Cancer: Basic and Clinical Research, 10, 93-102

Patient-reported outcomes in advanced breast cancer: Inside the label and approval documents
Hao Y, Krohe M, Mazar I, Galipeau N, Foley C, Globe D, Turner-Bowker D, Shields AL
Expert Review of Quality of Life in Cancer Care (2016) 1(3): 197-205.

Patient-reported outcomes in metastatic breast cancer: A review of industry-sponsored clinical trials
Krohe M, Hao Y, Lamoureux RE, Galipeau N, Globe D, Foley C, Mazar I, Solomon J, Shields AL
Breast Cancer: Basic and Clinical Research (2016) 10: 93–102.

Patient-reported outcomes in oncology drug labeling in the United States: A framework for navigating early challenges
Shields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud F
American Health & Drug Benefits (2016) 9(4):188-197.

Patient-reported preferences for oral versus IV administration for the treatment of cancer: a review of the literature
Eek D, Krohe M, Mazar I, Horsfield A, Pompilus F, Friebe R, Shields AL
Patient Preference and Adherence, 10, 1609-1621

Quality of life (QoL) and overall survival (OS) in patients (pts) with advanced clear-cell renal cell carcinoma (aRCC) treated with nivolumab (NIVI) vs. everolimus (EVE) in the phase III CheckMate 025 study
Cella D, Gruenwald V, Nathan PD, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJ
Poster presented at: American Society of Clinical Oncology (ASCO),  Chicago, Illinois, Jun 3-7, 2016

Quality of life (QoL) and overall survival (OS) in patients (pts) with advanced clear-cell renal cell carcinoma (aRCC) treated with nivolumab (NIVI) vs. everolimus (EVE) in the phase III CheckMate 025 study
Cella D, Gruenwald V, Nathan PD, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJ
Journal of Clinical Oncology 34, (suppl; abstr 4549)), 2016

Quality of life in patients with advanced renal cell carcinoma given nivolumab versus everolimus in CheckMate 025: a randomised, open-label, phase 3 trial
Cella D, Grünwald V, Nathan P, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJ
The Lancet Oncology, 17(7):994-1003

Systematic review of the caregiver burden in melanoma and renal cell carcinoma within Europe
Farrington E, Zagorska A, Burnett J
Poster session presented at the Society for Melanoma Research (SMR) 13th International Congress, Boston, USA, 6-9 November 2016

The humanistic burden of small cell lung cancer: A systematic review of the health-related quality of life literature
Panter C, Bennett BM, Wells J, Yuan Y, Penrod JR
Poster presented at the European Society for Medical Oncology, Copenhagen Denmark Oct 7-11, 2016

The Quality of Survival (QoS): A concept framework to assist communication and decision-making about cancer care
Fallowfield L, Nadler E, Greaney M, Gater A, Subar M, Orsini L, Lyman GH
Presented at the ASCO Cancer Survivorship meeting, January 2016

The societal and humanistic burden of small cell lung cancer (SCLC): A systematic review of societal impact and health-related quality of life (HRQoL) literature
Enstone A, Panter C, Greaney MH, Bennett B, Penrod JR, Yuan Y
Value in Health, 19(7), A748

The societal and humanistic burden of small cell lung cancer (SCLC): A systematic review of societal impact and health-related quality of life (HRQoL) literature
Enstone A, Panter C, Greaney MH, Bennett B, Penrod JR, Yuan Y
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Treatment patterns and clinical practices of advanced (stage IIIB and IV) non-small cell lung cancer (NSCLC) in Europe – A structured literature review
Brodowicz T, Niepel D, Booth E, Hernandez R, Braileanu G, Cawkwell M, Amelio J
Poster presented at the IASLC 17th World Conference on Lung Cancer, Vienna, Austria, December 4-7, 2016

The use of patient-reported outcomes in advanced breast cancer clinical trials: A review of the published literature
Turner-Bowker D, Hao Y, Foley C, Galipeau N, Mazar I, Krohe M, Globe D, Shields AL
Current Medical Research and Opinion (2016) 32 (10): 1709-1717. doi 10.1080/03007995.2016.1205005

Content validation and modification of the Treatment Satisfaction Questionnaire for Medication (TSQM) for use in breast cancer
DeBusk K, Maddux L, Turner-Bowker DM, Krupnick R, Skolas K, Patel S, Petersen J
Poster presentation at the San Antonio Breast Cancer Symposium, San Antonio, TX, December 8-12, 2015

Development and content validity testing of the Patient-Reported Outcomes of Fatigue in Cancer (PROOF-C) symptom severity assessment (SSA)
Yaworsky A, Ojo O, Foley C, Bonthapally V, Ma E, Norquist J, Pompilus F, Pearson J, Park J, Arbuckle R
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual International Congress, Philadelphia, PA, USA, 16-20 May 2015

Development and content validity testing of the patient-reported outcomes of fatigue in cancer (proof-c) symptom severity assessment (SSA)
Yaworsky A, Ojo O, Foley C, Bonthapally V, Ma E, Norquist J, Pompilus F, Pearson J, Park J, Arbuckle R
Value in Health, Volume 18, Issue 3, A210

Development, scoring and use of a patient questionnaire to measure the practical patient experience within oncology clinical trials
Manson S, Bonner N, Bennett B, Dewit O, Thomas G
DOI: 10.1200/jco.2015.33.15_suppl.e20567 Journal of Clinical Oncology 33, no. 15_suppl

Effect of nivolumab in combination with ipilimumab versus ipilimumab alone on quality of life in patients with treatment-naïve advanced melanoma: Results of a phase II study (CheckMate 069)
Abernethy AP, Postow MA, Chesney JA, Grossmann KF, Taylor F, Coon C, Gilloteau I, Dastani H, Gagnier P, Robert C
Poster session presented at:  American Society of Clinical Oncology (ASCO), 51st Annual Meeting, Chicago, USA, 29 May-2 June 2015

Effect of nivolumab on quality of life in patients with treatment-naïve advanced melanoma: Results of a phase III study (CheckMate 066)
Long GV, Atkinson V, Ascierto PA, Robert C, Hassel JC, Rutkowski P, Savage KJ, Taylor F, Coon C, Gilloteau I, Waxman I, Abernethy AP
Poster session presented at: American Society of Clinical Oncology (ASCO), 51st Annual Meeting, Chicago, USA, 29 May-2 June 2015

Evaluation of disease-related symptoms in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxel
Gralla RJ, Coon C, Taylor F, Penrod JR, DeRosa M, Dastani H, Orsini L, Reck M
Oral presentation presented at: World Conference on Lung Cancer, Denver, USA, 6-9 September 2015

Evaluation of overall health status in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxel in CheckMate 017
Reck M, Coon C, Taylor F, DeRosa M, Penrod JR, Dastani H, Orsini L, Gralla R
Oral presentation presented at: European Cancer Congress, Vienna, Austria, 25-29 September 2015

Health-related quality of life and health care resource use from a phase 3 study of nivolumab versus dacarbazine in patients with treatment-naïve advanced melanoma: CheckMate 066
Long GV, Taylor F, Gilloteau I, Dastani H, DeRosa M, Abernethy AP
Presented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015

Health-related quality of life and treatment satisfaction among patients receiving novel anti-androgen therapies for the treatment of metastatic castrate-resistant prostate cancer (mCRPC)
Dearden L, Shalet N, Artenie C, Mills A, Gater A, Grant L, Jackson C
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Patient reported outcomes from a phase 3 study of nivolumab alone or combined with ipilimumab (IPI) versus IPI in patients with advanced melanoma: CheckMate 067
Schadendorf D, Long GV, Larkin J, Wolchok J, Hodi S, Chiarion-Sileni V, Taylor F, Gilloteau I, Dastani HB, Walker D, Rollin L, Abernethy AP
Presented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015

Qualitative interviews to provide in-depth understanding of the impact of non-small cell lung cancer (NSCLC) and its treatment on of the lives of patients and their families/caregivers
Mulatero C, Lal R, Jewitt K, Tolley C, Wells J, Arbuckle R, Lloyd A, Brazier J, Devlin N
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Quality of survival (QoS) concept framework to assess the quality of prolonged life in advanced melanoma (MEL): Principles and application related to treatment with Nivolumab (NIVO)
Fallowfield L, Nadler E, Abernethy AP, Gilloteau I, Greaney M, Gater A, Orsini L, Subar M, Dastani HB, Lyman GH
Poster session presented at: European Cancer Congress, Vienna, Austria, 25-29 September 2015

Societal burden and impact on health related quality of life (HRQoL) of non-small cell lung cancer (NSCLC) in Europe
Enstone A, Panter C, Manley Daumont M, Miles R
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Systematic review of the caregiver burden in melanoma and renal cell carcinoma within Europe
Farrington E, Zagorska A, Burnett J
Poster session presented at the Society for Melanoma Research (SMR) 12th International Congress, San Francisco, USA, 2015

Use and usefulness of PRO endpoints in oncology trials
Shields AL
Invited session chair at the Drug Information Associations (DIA) meeting, Advancing the Science of Study Endpoints. Bethesda, MD USA

Patient-reported outcomes for US oncology labeling: Review and discussion of score interpretation and analysis methods
Shields AL, Coon C, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe D
Expert Review of Pharmacoeconomics & Outcomes Research, 15(6), 951-959

A European study of the emotional and physical impact of relapse on patients with multiple myeloma
Hulin C, Hansen T, Laurenson S, Lawrence J, Streetly M
Poster session presented at: 19th Congress of the European Haematology Association, Milan, Italy, 12-15 June 2014

Qualitative assessment of multiple myeloma symptoms and health-related quality of life in relapsed/refractory patients and comparison to the EORTC QLQ-C30 and MY-20, FACT-MM, and MDASI-MM
Trask PC, Taylor F, Shields A, Mehta J, Foley C, Olude O, Lamoureux R, Iovin R, Hsu K
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 19th Annual International Congress, Montréal, Canada, 1-3 June 2014

A qualitative assessment of symptoms and functional impact in relapsed/refractory multiple myeloma patients and comparison to the EORTC QLQ-C30 and MY-20, FACT-MM, and MDASI-MM
Trask P, Taylor F, Shields AL, Gallagher M, Mehta J, Foley C, Olude F, Lamoureux R, Iovin R
Poster presented at the 55th annual meeting of the American Society of Hematology, New Orleans, LA USA, 2013

Association of health-related quality of life and neurocognitive function with progression free survival and progressive disease in patients with glioblastoma: A review of the literature
Shields AL, Burgess S, Ravelo A, Taylor F, Mazar I, Abrey L
Poster presented at the 17th European Cancer Congress, Amsterdam, Netherlands, 2013

Disease state preference study in the UK general public for late-stage chronic lymphocytic leukaemia
Tolley K, Goad C, Yi Y, Maroudas P, Caravotas L, Thompson G
Eur J Health Econ 2013 Oct;14(5):749-59 [doi: 10.1007/s10198-012-0419-2. Epub 2012 Sep 1.]

PRO claims in Japanese oncology product labeling
Crawford B
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Qualitative assessment of symptoms and functional impact in relapsed/refractory multiple myeloma patients and comparison to the EORTC QLQ-C30 and MY-20, FACT-MM, and MDASI-MM
Trask P, Taylor F, Shields A, Gallagher M, Mehta J, Foley C, Olude F, Lamoureux R, Iovin R, Hsu K
Poster session presented at 55th American Society of Hematology Annual Meeting and Exposition, New Orleans, LA, 7-10 December 2013

Patient reported outcomes are changing the landscape in oncology care: Challenges and opportunities for the payer
Zagadailov E, Fine M, Shields AL
American Health & Drug Benefits, 6(5)

The effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: A randomized, double-blind, placebo-controlled trial
Mesa RA, Gotlib J, Gupta V, Catalano JV, Deininger MW, Shields AL, Miller CB, Silver RT, Talpaz M, Winton EF, Harvey JH, Hare T, Erickson-Viitanen S, Sun S, Sandor V, Levy RS, Kantarjian MN, and Verstovsek S on behalf of all COMFORT-I Investigators
Journal of Clinical Oncology, 31(10), 1285-1292

Use of the functional assessment of cancer therapy-anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Utility and willingness to pay for lung cancer treatments: Patient versus general population values in Thailand
Thongprasert S, Permsuwan U, Sakulbumrungsil R, Chaiyakunapruk N, Crawford B, Petcharapiruch S, Leartsakulpanitch J
Poster session presented at: HTAi, Seoul Korea, 17–19 June 2013

The progressive burden of myelofibrosis in untreated patients: An assessment of patient-reported outcomes in patients randomized to placebo in the COMFORT-I study
Mesa RA, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Sarlis NJ, Sandor V, Levy RS, Verstovsek S
Leukemia Research, 37(8), 911-916

Adherence to oral tyrosine kinase inhibitor therapies in chronic myeloid leukemia
Gater A, Heron L, Abetz-Webb L, Coombs J, Simmons J, Guilhot F, Rea D
Leuk Res 2012 Jul;36(7):817-25

Content validity of a treatment satisfaction questionnaire in non-Hodgkin’s lymphoma
Campbell A, Wiesner C, Garcia EB, Tatlock S, Humphrey S
Value Health 2012;15;A480

Content validity of a treatment satisfaction questionnaire in non-Hodgkin’s lymphoma
Campbell A, Wiesner C, Garcia EB, Tatlock S, Humphrey S
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Development and validation of the self-completed ascites impact measure to understand patient motivation for requesting a paracentesis
Crawford B, Piault E, Gotlieb W, Joulain F
Patient Relat Outcome Meas 2012;3:21

Development of a patient-reported outcome instrument in brain metastases: The Brain Metastases Symptom and Impact Questionnaire (BASIQ)
Lasch KE, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Fitzgerald K, Ray S
Podium presentation at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Development of a patient-reported outcome instrument in brain metastases: The Brain Metastases Symptom and Impact Questionnaire (BASIQ)
Lasch KE, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Fitzgerald K, Ray S
Value Health 2012;15:A1

Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: Results from a phase III clinical trial
O’Brien M, Hudgens S, King J, McNally R, Khan Z
Value Health 2012;15:A227

Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: Results from a phase III clinical trial
O’Brien M, Hudgens S, King J, McNally R, Khan Z
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Evaluation of the willingness-to-pay for cancer treatment in Korean metastatic breast cancer patients: A multicenter, cross-sectional study
Oh DY, Crawford B, Kim SB, Chung HC, McDonald J, Lee SY, Ko SK, Ro J
Asia Pac J Clin Oncol 2012;8:282

Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USA
Patrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould B
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Progressive worsening of patient-reported outcomes in untreated patients with myelofibrosis
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USA
Patrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould B
Value Health 2012;15:A431

Review of the content validity of the patient-reported outcome measures used in patients with brain metastases
Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

The progressive burden of myelofibrosis (MF) in untreated patients: An assessment of patient reported outcomes in placebo-treated patients from COMFORT-1
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S
Poster presented at the 17th Congress of the European Hematology Association (EHA). Amsterdam, Netherlands, 2012

Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Women’s experiences of group cognitive behaviour therapy for hot flushes and night sweats following breast cancer treatment: an interpretative phenomenological analysis
Balabanovic J, Ayers B, Hunter MS
Maturitas 2012;72:236

Review of the content validity of the patient-reported outcome measures used in patients with brain metastases
Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray S
Value Health 2012;15:227

Using primary patient data to identify the symptoms of brain metastases to develop a patient-reported outcome measure
Lasch KE, Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Ray S
J Clin Oncol 2012;30:e12515

An evaluation of statistical methods used to analyse patient-reported outcomes (PRO) data in published metastatic cancer studies
Gilet H, Brédart A, Regnault A, Bhandary D, Parasuraman B
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Associations between improvements in Myelofibrosis (MF) symptoms and quality of life measures with splenomegaly reduction in COMFORT-I: A randomized, double-blind, phase III trial of the JAK1 and JAK2 inhibitor ruxolitinib versus placebo in patients with MF
Mesa RA, Gotlib J, Gupta V, DiPersio J, Catalano J, Deininger M, Shields AL, Miller C, Silver R, Talpaz M, Winton E, Harvey J, Hare T, Erickson-Viitanen S, Sun W, Sandor V, Levy R, Kantarjian H, and Verstovsek S on behalf of all COMFORT-I Investigators
Poster presented at the 53rd annual meeting of the American Society of Hematology. San Diego, CA, USA, 10-13 December 2011

Medico-economic analysis of the impact of malnutrition on the post-operative course of colorectal cancer patients
Preaud E, Melchior JC, Carles J, Brami M, Duru G, Fontaine E, Hébuterne X, Lukacs B, Zazzo JF, Panis Y, Nitenberg G
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Oncology patient-reported claims: Maximising the chance for success
Kitchen H, Rofail D, Caron M
Ecancermedicalscience 2011;5:212

Overview of primary endpoints, progression-free survival (PFS) and overall survival (OS) for non-small cell lung cancer (NSCLC): Their value in treatment decisions and patient care
Heron L, De Castro Carpeño J, Chouaid C, Vergnenègre A, Bischoff H G, Walzer S
Value Health 2011;14:A177

Pain in castration-resistant prostate cancer with bone metastases: A qualitative study
Gater A, Abetz-Webb L, Battersby C, Parasuraman B, McIntosh S, Nathan F, Piault EC
Health Qual Life Outcomes. 2011 Oct 12;9:88

Quality of life in small cell lung cancer: Results of an open-label phase III clinical trial
Hudgens S, King J, Khan ZM
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Results using the modified Myelofibrosis Symptom Assessment Form (MFSAF v2.0) in COMFORT I: A randomized, double-blind phase III trial of JAK1/2 inhibitor ruxolitinib vs. placebo for patients with myelofibrosis (MF)
Mesa RA, Kantarjian H, Shields AL, Gotlib JR, Gupta V et al. on behalf of all COMFORT-1 investigators
Poster presented at the 16th Congress of the European Hematology Association. London, England, 9-12 June 2011

Quality of life in small cell lung cancer: Results of an open-label phase III clinical trial
Hudgens S
Value Health 2011;14:A460

Confirmation of Brief Pain Inventory Short Form (BPI-SF) ‘worst pain’ item cut-point for the assessment of pain progression in castration-resistant prostate cancer (CRPC)
Regnault A, Gater A, Battersby C, Meunier J, Abetz L
Value Health 2010;13:A274

Confirmation of Brief Pain Inventory Short Form (BPI-SF) ‘worst pain’ item cut-point for the assessment of pain progression in castration-resistant prostate cancer (CRPC)
Regnault A, Gater A, Battersby C, Meunier J, Abetz L
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Mixed treatment comparison of bevacizumab-based therapies relative to doublet-chemotherapy combinations to estimate the relative efficacy in progression-free survival for treatment of first-line advanced or metastatic non-small cell lung cancer (NSCLC)
Yi Y, Chouaid C, Vergnenegre A, Bischoff HG, Bergman G, Walzer S, Philips Z
Value in Health 2010; 13 (7): A253-A254

Mixed treatment comparison of bevacizumab-based therapies relative to doublet-chemotherapy combinations to estimate the relative efficacy in progression-free survival for treatment of first-line advanced or metastatic non-small cell lung cancer (NSCLC)
Yi Y, Chouaid C, Vergnenegre A, Bischoff HG, Bergman G, Walzer S, Philips Z
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Drivers of treatment decision following first-line therapy in advanced non-small cell lung cancer
Lasch K, Stokes J, Liepa A, Meldahl M, Arnett L, Basch E
Support Care Cancer 2010; 18:S88

Results of the patient-reported outcomes of fatigue in cancer consortium study:  patients define cancer-related fatigue
Lasch K, Marquis P, Zeytoonjian A, Yaworsky A, Leonard C, Patient-Reported Outcomes in Fatigue (PROOF) consortium
Poster session presented at: 2nd International Cancer Fatigue Symposium, Montreal, Canada, 3–4 October 2010

Utility elicitation study in the UK general public for late stage chronic lymphocytic leukaemia
Tolley K, Goad C, Yi Y, Maroudas P, Thompson G
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Evaluation of the willingness-to-pay for anticancer treatment among Korean patients with metastatic breast cancer: a multicenter, cross-sectional study
Lee S, Oh D, Kim S, Chung HC, Ko SK, Crawford B, McDonald J, Ro J
J Clin Oncol 2010;28:e11517

Evaluation of the willingness-to-pay for anti-cancer treatment amongst Korean metastatic breast cancer patients: A multicenter, cross-sectional study
Oh DY, Kim SB, Chung HC, Lee SY, Ko SK, Crawford B, McDonald J, Ro J
Poster session presented at: Korean Association for Clinical Oncology, Seoul, Korea, 21 November 2009

Oncology patient-reported claims: maximising the chance for success
Rofail D, Abetz L, Caron M, Emery MP, Kitchen H
Value Health 2009;12:A283

Ophthalmology

Development and content validity of the Patient-Reported Intraocular Lens Questionnaire (PR-ILQ)
Shields AL, Galipeau N, Chacko J, Lamoureux RE, Mazar I, Bowyer B
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Patient burden associated with wet age-related macular degeneration in Japan
Adachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Patient burden associated with wet age-related macular degeneration in Japan
Adachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Development and validation of the Impact of Dry Eye on Everyday Life (IDEEL) questionnaire, a patient-reported outcome (PRO) measure for the assessment of the burden of dry eye on patients
Abetz L, Rajagopalan K, Mertzanis P, Begley C, Barnes R, Chalmers R
Health Qual Life Outcomes 2011;9:111

Impact of Dry Eye on Everyday Life (IDEEL) – symptom bother: Estimating cut-off scores for dry eye severity groups
Acaster S, Verboven Y, Begley C, Chalmers R, Abetz L, Thompson T
Value Health 2011;14:A507

The Impact of Dry Eye on Everyday Life (IDEEL) questionnaire: Saturation, reliability, validity and discriminative ability compared to generic measures
Abetz L, Chalmers R, Begley C, Mertzanis P, Venkataraman K, Barnes R
Poster session presented at: 6th International Conference on the Tear Film & Ocular Surface (TFOS): Basic Science and Clinical Relevance, Florence, Italy, 22–25 September 2010

Vision-Related Quality of life instruments (QoL) after refractive cataract surgery
Tugaut B, Meunier J, Viala-Danten M, Arnould B, Berdeaux G
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Orphan drugs and rare diseases

Cognitive debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA)
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Understanding the life experience of Barth syndrome from the perspective of older individuals
Stokes J, Mazar I, Ollis S. Love E, Espensen A, Shields AL.
Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018

Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018

Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scale
Mayhew J, Bonner N, Arbuckle R, Turnbull A, Bowden A, Skrinar A.
Journal of Comparative Effectiveness Research. 2018; 7(4):381-395

Understanding the functional impact of movement disorders in glucose transporter type 1 seficiency syndrome (Glut1 DS)
Bowden A, Collins P, Blair S. Wedsock K, Haller M, Brandabur M, Hall R, Kilgariff S, Arbuckle R, Mayhew J, Skrinar A.
13th International Congress of Inborn Errors. Rio de Janiero, Brazil, 5-8 September, 2017

The functional impact of movement disorders symptoms in glucose transporter type 1 deficiency syndrome (Glut1 DS)
Bowden A, Kilgariff S, Hall R, Brandabur M, Collins P.
Poster presented at: 5th International Symposium on Paediatric Movement Disorders, Barcelon, Spain, 2-3rd February

Characterization of patients with galactosialidosis and sialidosis type 1
Cimms T, Ali Q A, Kilgariff S, Johnson C, Arbuckle R, Malkus B, Schatz A, Haller C.
Poster presentation at the 13th International Congress of Inborn Errors, 5-8 September 2017

Development of a paroxysmal movement disorder diary for patients with glucose transporter type 1 deficiency syndrome (Glut1 DS)
Hall R, Kilgariff S, Collins P, Brandabur M, Arbuckle R, Bowden A.
21st International Congress of Parkinson’s Disease & Movement Disorder, June 4-8, 2017 in Vancouver, BC

Psychometric validation of a patient-reported outcome questionnaire in patients with pancreatic exocrine insufficiency
Johnson C, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch M.
Poster presented at the 49th Meeting of the European Pancreatic Club (EPC), 28 June 2017

Qualitative assessment of the symptoms and impact of pancreatic exocrine insufficiency (PEI) to inform the development of a patient-reported outcome (PRO) instrument
Johnson C D, Arbuckle R, Bonner N, Connett G, Dominguez-Munoz E, Levy P, Staab D, Williamson N, Lerch M M.
Patient. 2017; 10(5): 615–628

Saturation of sign and symptom concepts in concept elicitation studies with rare disease and vulnerable patient populations
Mazar I, Stokes J, Shields AL.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Initiatives that impact pricing and reimbursement of orphan (and ultra orphan) drugs: Review of European trends
Rousseau B, Poinas AC, Oliver L, Collings H.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Cognitive debriefing of the Primary Mitochondrial Myopathy – Symptom Assessment (PMM-SA)
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Oral presentation at the 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1 2017); Alexandria, VA USA

Exploring the sign and symptom experience of Barth syndrome in adult and adolescent populations
Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Exploring and documenting the signs, symptoms, and impacts of primary mitochondrial disease
Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Cognitive debriefing of the Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF)
Taylor F, Kreil S, Reiter A, Horny HP, Evans E, Mazar I, McNamara P, Boral A, Lamoureux RE, Shields A, Gotlib J.
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of the BPI-SF and WOMAC® for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Bonner N, Spencer H.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H.
10th International Meeting of Pediatric Endocrinology, Washington DC, USA, 14-17 September, 2017

Psychometric evaluation of the Brief Pain Inventory – Short Form (BPI-SF) and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC®) for use in X-Linked Hypophosphataemia (XLH), a rare genetic disorder
Theodore-Oklota C, Brohan E, Marshall C, Tritton T.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Techniques for the psychometric evaluation of clinical outcome assessment (COA) measures used in rare disease
Turner-Bowker DM, Sen R, Morrissey L, Kelly M, Severson K, Litcher-Kelly L.
24th Annual Conference of the International Society for Quality of Life Research (ISOQOL). Philadelphia, PA 2017

Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J.
Poster session presented at the ISPOR 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphatemia and evaluate the suitability of the BPI-SF and WOMAC® as clinical trial endpoints
Theodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar A.
Value in Health (accepted for publication)

Challenges and solutions associated with patient-centered outcomes in rare diseases
Bonner N, Panter C, Spencer H, Braid J, Bennett B.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Development and content validity of the advanced systemic mastocytosis symptom assessment form (ADVSM-SAF)
Mazar I, Evans E, Taylor F, Patki A, Ojo O, Lamoureux RE, Horny H, Reiter A, Gotlib J, Shields A.
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H.
Poster presented at the 68th annual meeting of The American Academy of Neurology Annual Meeting in Vancouver, Canada

Towards a composite clinical endpoint: Identifying a core set of patient and caregiver relevant outcome measures through qualitative research on the global impact of Dravet syndrome
Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N.
Poster presented at: European Congress on Epileptology, Prague 2016

Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension
Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H.
Movement Disorders. 30(10):e7, SEP 2015

Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz-Webb L, Renault L, Caballero T, Longhurst H, Maurer M, Christiansen S, Zuraw B and for the Icatibant Outcome Survey (IOS) International Executive Committee and the Hereditary Angioedema Association (HAEA) Medical Advisory Board.
Health Qual Life Outcomes. 2015, 13:92

Development of a patient-reported outcome measure in pancreatic exocrine insufficiency (PEI)
Johnson C, Arbuckle R, Nonner N, Connet G, Dominguez-Munoz E, Haeusler J, Levy P, Platon J, Schifflers M, Staab D, Williamson N, Lerch M.
Poster presented at: European Pancreatic Club, Spain, June 2015

Development of evidence packages for regulatory and reimbursement submissions in rare diseases: real-world examples
Bonner N, Bowden A, Bal V, Kilburg A.
Workshop presented at: 18th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Milan, Italy, 7-11 November 2015

Development of patient-centered outcomes in rare diseases
Bonner N, MacCulloch A, Bennett B.
Poster session presented at: World Orphan Drug Congress, Geneva, Switzerland, 11-13 November 2015

Qualitative research to better understand the experience of Pancreatic Exocrine Insufficiency (PEI) symptoms from the patient perspective
Bonner N, Tolley C, Williamson N, Arbuckle R, Platon J, Haeusler J, Schifflers M.
Poster presented at European Pancreatic Club, Southampton, June 2014

The effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: a randomized, double-blind, placebo-controlled trial
Mesa RA, Gotlib J, Gupta V, Catalano JV, Deininger MW, Shields AL, Miller CB, Silver RT, Talpaz M, Winton EF, Harvey JH, Hare T, Erickson-Viitanen S, Sun S, Sandor V, Levy RS, Kantarjian MN, and Verstovsek S on behalf of all COMFORT-I Investigators.
Journal of Clinical Oncology, 31(10), 1285-1292. 2013

Use of the functional assessment of cancer therapy-anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20-22 May 2013

The progressive burden of myelofibrosis in untreated patients: an assessment of patient-reported outcomes in patients randomized to placebo in the COMFORT-I study
Mesa RA, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Sarlis NJ, Sandor V, Levy RS, Verstovsek S.
Leukemia Research, 37(8), 911-916. 2013

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T.
Value Health 2012;15:A558

Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies
Bonner N, Abetz L, Renault L, Caballero T.
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J.
Value Health 2012;15:A308

Gaining reimbursement of orphan products in Europe: challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J.
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents
Abetz-Webb A, Arbuckle R.
Workshop presented at: 6th European Conference on Rare Diseases & Orphan Products, Brussels, Berlin, 23–25 May 2012

Progressive worsening of patient-reported outcomes in untreated patients with myelofibrosis
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S.
Poster presented at the 17th annual international meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Washington DC, USA, 2012

The progressive burden of myelofibrosis (MF) in untreated patients: An assessment of patient reported outcomes in placebo-treated patients from COMFORT-1
Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S.
Poster presented at the 17th Congress of the European Hematology Association (EHA). Amsterdam, Netherlands, 2012

Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia
Hudgens S, Gale RP, Tencer T, Khan Z.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 17th Annual International Meeting, Washington, USA, 2-6 June 2012

Associations between improvements in Myelofibrosis (MF) symptoms and quality of life measures with splenomegaly reduction in COMFORT-I: A randomized, double-blind, phase III trial of the JAK1 and JAK2 inhibitor ruxolitinib versus placebo in patients with MF
Mesa RA, Gotlib J, Gupta V, DiPersio J, Catalano J, Deininger M, Shields AL, Miller C, Silver R, Talpaz M, Winton E, Harvey J, Hare T, Erickson-Viitanen S, Sun W, Sandor V, Levy R, Kantarjian H, and Verstovsek S on behalf of all COMFORT-I Investigators.
Poster presented at the 53rd annual meeting of the American Society of Hematology. San Diego, CA, USA, 10-13 December 2011

Results using the modified Myelofibrosis Symptom Assessment Form (MFSAF v2.0) in COMFORT I: a randomized, double-blind phase III trial of JAK1/2 inhibitor ruxolitinib vs. placebo for patients with myelofibrosis (MF)
Mesa RA, Kantarjian H, Shields AL, Gotlib JR, Gupta V et al. on behalf of all COMFORT-1 investigators.
Poster presented at the 16th Congress of the European Hematology Association. London, England, 9-12 June 2011

Other publications

Multiple indications

Placement of recall period in patient-reported outcome questionnaire items: Does it matter? 
Mazar I, Taylor F, Higgens S, Shields AL, Carson R, Eremenco S, Reasner DS, Levy-Hacham O, Mizrahi R, Nadler-Milbauer M, Nov O, Toledano O, Coons SJ
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of the BPI-SF and WOMAC® for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Bonner N, Spencer H
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H
Abstract submitted to 10th International Meeting of Pediatric Endocrinology, Washington DC, USA, 14-17 September, 2017

Qualitative research to explore the patient experience of X-Linked Hypophosphatemia and evaluate the suitability of the BPI-SF and WOMAC® as clinical trial endpoints
Theodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar A
Value in Health (accepted for publication)

The burden of relapse on European hematologists treating multiple myeloma
Hansen T, Streetly M, Laurenson S, Lawrence J, Hulin C
Poster session presented at: 19th Congress of the European Haematology Association, Milan, Italy, 12-15 June 2014

The reliability of the patient-reported scar evaluation questionnaire (PR-SEQ) in a cohort of adults with linear scars
Pleil A, Mathias A, Galipeau N, Shields AL, Jensen J
Poster presented at the 19th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Montreal, QC Canada

Economic impact of thromboembolism following major orthopedic surgery in Japan
Takai S, Akagi M, Crawford B,  Ichinohe S, Majima T, Mikami H, Niki Y, Tanaka S, Tsumura H
Value Health 2013; Regional Issue 2: 81-86

Health-related quality of life and productivity impact of myelodysplastic syndromes (MDS): The patient perspective
Komrokji R, Mahmoud D, Hudgens S, Taylor F, Pompilus F, Hwang S, Beach CL
Poster session presented at: 12th International Symposium on Myelodysplastic Syndromes, Berlin, 8-11 May 2013

Effectiveness of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russia
Shin S, Livchits V, Smith Connery H, Shields AL, Fitzmaurice G, Nelson A, Greenfield S
Addiction. 108(8),1387-1396

Training and fidelity monitoring of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russia: the IMPACT effectiveness trial
Smith Connery H, Greenfield SF, Livchits V, McGrady L, Patrick N, Lastimoso C, Hart J, Nelson AK, Shields AL et al. on behalf of the Tomsk Tuberculosis Alcohol Working Group
Substance Use and Misuse, 48(9):784-792

Health-related quality of life, treatment satisfaction, adherence and persistence in β-thalassemia and myelodysplastic syndrome patients with iron overload receiving deferasirox: Results from the EPIC clinical trial
Porter J, Bowden DK, Economou M, Gater A et al
Anemia, vol. 2012

Content validity of utility assessment in type 2 diabetes and Alzheimer’s disease
McGrath C, Rofail D, Abetz L
Qual Life Res 2010;19:29

Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer’s disease
McGrath C, Rofail D, Gargon E, Abetz L
Health Qual Life Outcomes 2010;8:23

Other publications

Informing a priori sample size estimation in qualitative concept elicitation interview studies for clinical outcome assessment instrument development
Turner-Bowker DM, Lamoureux RE, Stokes J, Litcher-Kelly L, Galipeau N, Yaworksy A, Solomon J, Shields AL
Value in Health

Evaluation of modified item characteristics on item comprehension and psychometric performance
Turner-Bowker DM, DeRosa M, Bjorner JB
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018.

Multi-comparator ICER: A new framework for cost-effectiveness analysis
Ratcliffe A, Lucherini S, Hughes R, Okhuoya P
Poster presented at the HTAi conference, Vancouver, Canada, 1-5 June 2018

Interpretation guidelines to define clinical relevance for patient-reported outcome (PRO) measures
Cocks K, Sully K, King M
Workshop presented at the International Society for Quality of Life Research (ISOQOL), Dublin, Ireland, 24-27 October 2018

Establishing anchor-based minimally important differences (MID) with the EORTC quality-of-life measures: a meta-analysis protocol
Musoro ZJ, Hamel J-F, Ediebah DE, Cocks K, King MT, Groenvold M, Sprngers MAG, Brandberg Y, Velikova G, Maringwa J, Flechtner H-H, Bottomley A, Coens C.
BMJ Open

Conducting qualitative ‘exit’ interviews following clinical trials or observational studies: a valuable method for understanding the patient experience, informing measurement strategy, and aiding interpretation of patient-reported outcomes
Arbuckle R, Carson RT, Maltzahn R, Staunton H
Workshop presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, US, 20-24 May 2017

Differences in vaccine pricing between high-income and low-income markets
Fadeyi I, McLean T, Tavella F, Heron L
Podium presentation at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

The use of qualitative (exit) interviews in clinical trials: Value, implementation and key considerations
Gater A, Marshall C, Grant L, Wells J
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Congress, Boston MA, USA, 20-24 May 2017

Development and validation of patient-reported outcome measures (PROMs): Selecting the most appropriate qualitative research methods to establish content validity
Grant L, Wells J, Kilgariff S, Marshall C, Gater A
Poster presented at the Advances in Patient Reported Outcomes Research Conference, 8 June 2017

Techniques for tailoring an interview guide for pediatric concept elicitation and cognitive debriefing interviews
Krohe M, Morrissey L, Turner-Bowker, DM
Poster session presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

How does measurement of multiple medication adherence differ between chronic diseases?
Malmenäs M, Pednekar P, Bennett B, Borah B
Forum presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

A worked example of using computer-assisted qualitative data analysis software (CAQDAS) to support content validity in patient-centered outcomes research
Marshall C, Grant L, Wells J, Williamson N, Gater A
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 22nd Annual International Meeting, Boston, US, 20-24 May 2017

Qualitative research methods for collecting, analyzing, and presenting patient-reported data on noticeable and important change in disease-related signs and symptoms
Mazar I, Stokes J, Foley C, Galipeau N, Shields AL
Poster presented at  the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November

Saturation of sign and symptom concepts in concept elicitation studies with rare disease and vulnerable patient populations
Mazar I, Stokes J, Shields AL
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Initiatives that impact pricing and reimbursement of orphan (and ultra orphan) drugs: Review of European trends
Rousseau B, Poinas AC, Oliver L, Collings H
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

The use of intra-class correlation coefficients to assess test-retest reliabilities in psychometric evaluations of patient-reported outcome measures
Sen R, Yip C, Severson K
Poster submitted to the 20th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research. Glasgow, Scotland. 4-8 November.

Techniques for the psychometric evaluation of clinical outcomes assessment (COA) measures used in rare disease
Turner-Bowker DM, Sen R, Morrissey L, Kelly M, Severson K, Litcher-Kelly L
24th Annual Conference of the International Society for Quality of Life Research

Assessing the joint probability of cost-effectiveness and affordability in decision making
Yi Y, Lucherini S, Bellanca L, Heron L
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Psychometric evaluation of a treatment acceptance measure for use in patients receiving treatment via subcutaneous injection
Tatlock S, Sanchez R, Grant L, Khan I, Manvelian G, Spertus J
Value Health. 2017 Mar;20(3):430-440

A patient-centred approach to developing patient-reported outcome measures (PROMs): Patients as research partners, not just participants
Panter C, Williamson N, Tatlock S, Hall R, Wells J, Gater A
Poster presented at: PROMs conference, Sheffield, UK, 9 June 2016

BEACON: A summary framework to overcome potential reimbursement hurdles
Dunlop W, Mullins D, Pirk O, Goeree R, Postma M, Enstone A, Heron L
macoEconomics (2016). doi:10.1007/s40273-016-0427-7

Challenges and solutions associated with patient-centered outcomes in rare diseases
Bonner N, Panter C, Spencer H, Braid J, Bennett B
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Creating clinical outcome assessments on electronic platforms from the beginning: Challenges, consideration and advantages
Arbuckle R, Kilgariff S, Hall R, O’Donohoe P
Poster presented at ISOQOL, Copenhagen, Denmark, 19 – 22 October 2016

Empowering patient populations with physical or cognitive limitations through electronic clinical outcome assessments (eCOAs)
Tolley C, Garner K, Abel J
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Exploring and leveraging known resources to support pediatric clinical outcomes assessment (COA) development
Turner-Bowker D, Krohe M, Banderas CA
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Measuring multiple medication adherence – which measure when?
Pednekar P, Agh T, Malmenas M, Bennett B
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Patient reported outcomes status update on meaningful score changes to establish endpoint definitions: Challenges, observations, and (some) solutions from the field
Shields AL
Invited presentation for the DIA’s 3rd annual meeting on Advancing the Science of Study Endpoints. Washington DC, USA

Psychometric evaluation of clinical outcomes assessments in a phase II trial
Huang VW, Banderas B, Sen R
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

Simultaneous development of PRO questionnaires for use in clinical trials and ‘real-world’ situations
Shields A, Stokes J, Foley C, Banderas B, Sundaram M
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Taking the ‘burden’ out of caregiver burden
Grant L, Kilgariff S, Hall R, Braid J, Bennett B
Pharmaphorum.com

The things kids say:  Clinical outcome assessments in pediatric clinical trials
Jackson C, Treem W, Turner-Bowker DM, Calarco G, Paty J, Mulberg A
Forum presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016

Understaning relationships between symptoms and impacts through a narrative analysis lens
Solomon J, Shields AL, Globe D, Foley C, Roy A, Pompiluus F, Yaworsky A, Ghate S, Perez JR
Poster presented at the 23rd Annual Conference of International Society for Quality of Life Research (ISOQOL); Copenhagen, Denmark

Web-based budget impact and pricing scenarios planning model: Example from the United Kingdom
Rousseau B, Johnson B, Topachevskyi O, Volovyk A
Value in Health 2016, Volume 19, Issue 3, A79

Web-based budget impact and pricing scenarios planning model: Example from the United Kingdom
Rousseau B, Johnson B, Topachevskyi O, Volovyk A
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Best practice in health outcomes research
Bonner N
Pharmaphorum [Online] 2015

Developing and evaluating electronic clinical outcome assessments (eCOAs) for use in patient populations with substantial physical or cognitive limitations
Tolley C
eCOA Forum Scientific Sessions, Oxford, UK, 27th October 2015

Developing tools for use in clinical practice – a methodological approach
Tolley C, Hall R, Mills K, Bennett B
Poster session presented at International Society for Quality of Life Research (ISOQOL), 22nd Annual Conference, Vancouver, Canada, 21-24 October 2015

Development and content validity testing of a patient-reported treatment acceptance measure for use in patients receiving treatment via subcutaneous injection
Tatlock S, Grant L, Spertus J, Khan I, Arbuckle R, Manvelian G, Sanchez R
Value Health 2015;18;8:1000-1007

Development of evidence packages for regulatory and reimbursement submissions in rare diseases: real-world examples
Bonner N, Bowden A, Bal V, Kilburg A
Workshop presented at: 18th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Milan, Italy, 7-11 November 2015

Development of patient-centered outcomes in rare diseases
Bonner N, MacCulloch A, Bennett B
Poster session presented at: World Orphan Drug Congress, Geneva, Switzerland, 11-13 November 2015

Digital methodologies in the development of clinical outcome assessments
Tolley C, Gater A, Marshall C, Dickie G, Kilgariff S
Poster session presented at International Society for Quality of Life Research (ISOQOL), 22nd Annual Conference, Vancouver, Canada, 21-24 October 2015

How many subjects are enough for symptom-focused concept elicitation studies? A retrospective analysis of saturation across twenty-six studies
Lamoureux R, Galipeau N, Yaworsky A, Stokes J, Shields AL
Poster session presented at: 20th Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Philadelphia, PA, USA, 16-20 May 2015

Patient reported endpoints and the relevance to payers and regulators: Is there agreement?
Trask P, Bal V, Halling, K, Reasner D, Turpin R, Daniels S, Shields A
Invited panel at the 6th Annual Patient-reported Outcome Workshop. Silver Spring, MD USA

Telephone versus face-to-face interviews for patient-reported outcome instrument development
Mazar I, Lamoureux R, Ojo O, Kevane G, Banderas B, Stokes J, Shields A
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Unique challenges in development, psychometric evaluation and interpretation of daily and event diaries as endpoints in clinical trials
Gater A, Coon CD, Nelsen LM, Girman C
Therapeutic Innovation and Regulatory Science 2015, 49(6): 813-821

Using classical test theory, item response theory, and Rasch measurement theory to evaluate patient-reported outcome measures: A comparison of worked examples
Petrillo J, Cano SJ, McLeod LD, Coon CD
Value in Health 2015;18(1):25-34

Clinical outcome assessment (COA) instrument scoring: The validity and precision of unweighted summary scores verse IRT weighted scores, and the added value of IRT standard errors
Coon CD, Lenderking WR
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Amsterdam, Netherlands, 8-12 November 2014

Development and validation of COA instruments as eCOA from the beginning: Advantages, opportunities and challenges
Gater A
Presentation at eCOA Forum Scientific Sessions, University of Oxford, 24-25 June 2014

Development of a patient-led end of study questionnaire to evaluate the experience of clinical trial participation
Brohan E, Bonner N, Turnbull A, Khan S, Dewit O, Thomas G, Manson S
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Development, validation and use of observer-reported outcomes in clinical trials: challenges and solutions
Patrick DL, Arbuckle R, Burke L
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Moving beyond the traditional psychometric validation of new phase 3 clinical outcome assessments
Kammerman LA, Izem R, Coon C, Johnson LL
Podium presentation at the Drug Information Association 50th Annual Meeting; June 2014. San Diego, CA

Informing drug development and clinical practice through patient-centered outcomes research
Coon CD, Lau DT
Clinical Therapeutics 2014;36(5):616-8

“Not just little adults”: Qualitative methods to support the development of pediatric patient-reported outcomes
Arbucke R, Abetz-Webb L
Patient 2013;6(3):143-59

A parent-administered but child-completed patient-reported outcome (PRO) provides a measure with content validity that is valid and reliable for use in children aged 6 to 11 years
Arbuckle R, Marshall C
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Determining the magnitude of a detectable and a relevant treatment benefit in aesthetic medicine using a photoguide and the internet
Pleil AM, Bushmakin AG, Shields AL, Jensen J, Cappelleri JC
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Evaluating and improving methods for cognitive debriefing PRO questionnaires
Stokes J, Yaworsky A, Galipeau N, Pompilus F, Foley C, Lamoureux R, Lovin R, Shields A
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th International Meeting, New Orleans, USA, 20 -22 May 2013

Exploratory structural equation models: A simulation study exploring geomin and target rotation techniques on variations of ESEM models
Sen R
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

How burdensome is completion of electronic patient-reported outcomes (ePRO)? Item completion times and qualitative evidence from studies in four different health conditions
Arbuckle R, Tolley C, Burbridge C
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

The development and validation of clinician-reported outcome instruments: The application of methods from patient-reported outcomes
Arbuckle R, Kitchen H, Tatlock S
Workshop presented at: 20th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Miami, USA, October 9-12th, 2013

The effect of medical device dose-memory functions on patients’ adherence to treatment, confidence, and disease self-management
Hall R, Willgoss T, Humphrey L, Kongsø JH
Patient Prefer Adherence, 2013;8:775-788

The effect of medical devices with dose-memory and reminder functions on patients’ treatment adherence confidence and disease self-management
Hall R, Harald-Kongsø J, Humphrey L, Willgoss T
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

The use of creative exercises to maximise content drawn from concept elicitation interviews used to develop symptom and health-related quality of life measures in pediatric populations with chronic disease
Arbuckle R, Abetz-Webb L
Oral presentation presented at: 20th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Miami, USA, October 9-12, 2013

The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/ adolescents: qualitative and quantitative insights
Arbuckle R, Holloway L, Carson RT, Dennee-Sommers B, Abetz-Webb L
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR),  16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

An interactive overview of using Computer-Assisted Qualitative Data Analysis Software (CAQDAS) in health outcomes research
Kitchen H, Marshall C
Workshop presented at: International Society for Quality of Life Research, 19th Annual Conference, Budapest, Hungary, 24–27 October 2012

Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J
Value Health 2012;15:A308

Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processes
Heron L, Laurenson S, Costello J, Anderl C, Knospe J
Poster presented at the 15th Annual European Congress of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Berlin, Germany, 2012

Introduction to patient-reported outcomes
Crawford B, Yao K
Short course pressented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 5th Asia-Pacific Conference, Taipei, Taiwan, 2–4 September 2012

Evaluating the impact of patient recruitment and retention practices
Lamberti M J, Mathias A, Myles J, Howe D, Getz K
Drug Inf J 2012;46:573

Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents
Abetz-Webb A, Arbuckle R
Workshop presented at: 6th European Conference on Rare Diseases & Orphan Products, Brussels, Berlin, 23–25 May 2012

Listening to the patient: Using patient-reported outcomes to optimise adherence and inform healthcare decisions
Gater A
Journal For Patient Compliance Strategies to enhance Adherence and Health Outcomes. 2012; 2(2). 28-31

Pediatric patient-report outcomes and pediatric clinical trial design: Challenges and solutions
Arbuckle RA, Tassinari MS, Carson RT, Baird M
Workshop presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2–6 June 2012

Linguistic validation of translation of the Self-Assessment Goal Achievement (SAGA) questionnaire from English
Piault E, Doshi S, Brandt BA, Angün Ç, Evans CJ, Bergqvist A, Trocio J
Health Qual Life Outcomes 2012 23;10:40

Selection and development of clinical outcome assessments (COAs) for use in pediatric clinical trials
Tassinari MS, Wang P, Abetz L, Patrick D, Rofail, D, Lee J, Papadopoulos E
Oral presentation at Third Annual Patient-Reported Outcome Consortium workshop, Silver Spring, USA, 4 April 2012

Service user attachments to psychiatric key workers and teams
Arbuckle R, Berry K, Taylor JL
Soc Psychiatry Psychiatr Epidemiol 2012;47:817

Using Mapped EQ-5D from disease-specific measures in cost-utility analysis: What is the current state in Asia Pacific?
Leartsakulpanitch J, Crawford B, Lee EK, Chiou CF
Issue panel presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 5th Asia-Pacific Conference, Taipei, Taiwan, 2–4 September 2012

Pushing the boundaries of quality of life research: Using patients’ words in a gap analysis of PRO measures
Mukherjee Bal V, Lasch K
Qual Life Res 2012;20:13

Utilization of Rasch measurement models for assessing validity: A mixed methods approach
Hudgens S, Globe D, Burgess S M
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual International Meeting, Washington, USA, 2–6 June 2012

‘Market access’ or just a new way of thinking about value?
Charlesworth B
Pharmaphorum 3 May 2011

Guidelines for pharmacoeconomic evaluation for Serbia
Novakovic T, Tesic D, Stefanovic D, Medic G, Sovtic D
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Paediatrics: An unexplored and rewarding population – the right methods make it easier
Abetz L
Pharmaphorum 28 July 2011

The impact of regulatory (FDA and EMA) and EUNETHTA guidelines on patient-reported outcomes and health-related quality of life on market authorisation and pricing
Arnould B, Symonds T, Trueman P, Pavlovic M, Abetz L
Issue panel presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

The value of medicine: opportunities, not threats
Charlesworth B
Pharmaphorum 10 June 2011

The role of health-related quality of life data in the drug approval processes in the United States and Europe: a review of guidance documents and authorizations of medicinal products from 2006 to 2010
Marquis P, Caron M, Emery M P, Scott J, Arnould B, Acquadro C
Pharm Med 2011; 25:147

Value Based Health Care Working Group
Naci H
Workshop presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mind
Rofail D, Regnault A, Taylor F, Filonenko A
Patient.  2011;4(4):22

An introduction to pediatric patient-reported outcomes and pediatric clinical trial design
Arbuckle R, Abetz-Webb L, Carson R, Edelman Lewis B, Chassany O
Workshop presented at the International Society for Quality of Life Research 17th Annual Conference, London, UK, 27–30 October 2010

Conducting outcomes research in Asia: Challenges of local adaptation of global OR studies
Crawford B, Wang L, Leartsakulpanitch J
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 4th Asia-Pacific Conference, Phuket, Thailand, 5–7 September 2010

Health care data in Asia: Collecting, sharing and using
Bae S, Pwu RF, Xu L, Srithamrongsawat S, Ikdea S, Aljunid S, Bhattacharjya A, Crawford B, Sung J
Plenary session at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 4th Asia-Pacific Conference, Phuket, Thailand, 5–7 September 2010

PRO development: Rigorous qualitative research as the crucial foundation
Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K
Qual Life Res 2010;19(8):1087-1096

Psychometric validation of the ascites impact measure questionnaire to assess patient symptoms that trigger a paracentesis
Piault E, Yeh Y, Crawford B, Joulain F, Gotlieb W
Qual Life Res 2010;19:116

The missing piece between treatment experience and intention to persist: Testing the internal consistency reliability and predictive validity of acceptability
Viala-Danten M
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mind
Rofail D, Regnault A, Taylor F, Filonenko A
Poster session presented at ISPOR 13th Annual European Congress, Prague, 6-9 November 2010

Using population-based data in outcomes research studies: Strengths, weaknesses and lessons learned
Chen W, Tang CH, Crawford B, Sung J
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 4th Asia-Pacific Conference, Phuket, Thailand, 5–7 September 2010

Advanced patient-reported outcomes assessment: Psychometric methods
Crawford B, Rosa K, McDonald J
Short course presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 14th Annual International Meeting, Orlando,  USA, 16–19 May 2009

Strategy and guidelines for conducting and analyzing patient-reported outcomes in clinical trials
Crawford B, Rosa K, McDonald J
Short course presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 14th Annual International Meeting, Orlando, USA, 16–19 May 2009

Medical savings accounts in China
Yi Y, Maynard A
Euro Observer 2008; 10(4):12-14

The significance of patient-reported outcomes to facilitate market access during a product’s lifecycle
Rofail D, Abetz A, Gater A, Brown C
Presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 11th Annual Congress, Athens, 8–11 November 2008

Paediatrics

Clinician (ClinRO) and caregiver (ObsRO) reported severity assessments for respiratory syncytial virus (RSV) in infants and young children: Development and qualitative content validation of Pediatric RSV Severity and Outcome Rating Scales (PRESORS)
Scott J, Tatlock S, Kilgariff S, Arbuckle R, Abetz-Webb L, Rusch S, Steven M.
Poster Presentation at the ISOQOL 25th Annual Conference in Dublin, Ireland, 24-27 October 2018

Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research 23rd International Meeting, Baltimore MD, USA 19-23 May 2018

Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints
Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H.
10th International Meeting of Pediatric Endocrinology, Washington DC, USA, 14-17 September, 2017

Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone
Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J.
Poster session presented at the ISPOR 22nd Annual International Meeting, Boston, MA USA, 20-24 May 2017

Techniques for tailoring an interview guide for pediatric concept elicitation and cognitive debriefing interviews
Krohe M, Morrissey L, Turner-Bowker, DM.
Poster presented at the 22nd Annual International Meeting of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Boston, MA USA, 20-24 May 2017

Cognitive testing of an electronic version of the Faces Pain Scale-Revised with pediatric and adolescent sickle cell patients
Gupta N, Naegeli AN, Turner-Bowker DM, Flood EM, Heath LE, Mays SM, Dampier C.
Patient. 2016 Mar 30. [Epub ahead of print]

Exploring and leveraging known resources to support pediatric clinical outcomes assessment (COA) development
Turner-Bowker D, Krohe M, Banderas CA.
Workshop presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Exploring the qualitative experience of chest congestion with children and adults to develop patient-reported outcome items to self-assess symptoms of the common cold
Grant L, Marshall C, Burrows K, Khammo N, Albrecht H, Arbuckle R, Shea T.
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

Practical considerations for the use of clinical outcome assessments (COAs) in pediatric clinical research: Examples from pediatric gastroenterology
Kovacs S, Turner-Bowker DM, Calarco G, Mulberg A, Paty J.
Therapeutic Innovation & Regulatory Science 2016, Vol. 50(1) 37-43

The things kids say:  Clinical outcome assessments in pediatric clinical trials
Jackson C, Treem W, Turner-Bowker DM, Calarco G, Paty J, Mulberg A.
Forum presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016

What represents a meaningful improvement in symptom-free days (SFD) and rescue-free days (RFD) for children? Perspectives from children and caregivers (Paediatric Asthma: Evaluation and Treatment)
Nelsen LM, Staunton H, Sully K, Khindri S, Svedsater H, Arbuckle R.
Poster session presented at: ATS International Conference, San Francisco, USA, 13-18 May 2016

Developing a pediatric COA measurement strategy; a case study in asthma
Arbuckle R.
Oral presentation presented at: 5th Annual Critical Path Institute Patient-Reported Outcome (PRO) Consortium Workshop, Silver Spring, USA, April 29-30, 2014

Measuring the symptoms of pediatric constipation and irritable bowel syndrome with constipation: expert commentary and literature review
Arbuckle R, Carson R, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis B, Gargon E et al.
Patient (2014) 7:343-364

“Not just little adults”: Qualitative methods to support the development of pediatric patient-reported outcomes
Arbucke R, Abetz-Webb L.
Patient 2013;6(3):143-59

A parent-administered but child-completed Patient-Reported Outcome (PRO) provides a measure with content validity that is valid and reliable for use in children aged 6 to 11 years
Arbuckle R, Marshall C.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Agreement between child and parent symptom diary responses in Chronic Constipation (CC) and Irritable Bowel Syndrome with Constipation (IBS-C): implications for the measurement of symptoms in young children
Holloway L, Arbuckle R, Carson RT, Dennee-Sommers B, Abetz-Webb L.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

The use of creative exercises to maximise content drawn from concept elicitation interviews used to develop symptom and health-related quality of life measures in pediatric populations with chronic disease
Arbuckle R, Abetz-Webb L.
Oral presentation presented at: 20th Annual Conference of the International Society for Quality of Life Research (ISOQOL), Miami, USA, October 9-12, 2013

The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/ adolescents: qualitative and quantitative insight
Arbuckle R, Holloway L, Carson RT, Dennee-Sommers B, Abetz-Webb L.
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research, 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents
Abetz-Webb A, Arbuckle R.
Workshop presented at: 6th European Conference on Rare Diseases & Orphan Products, Brussels, Berlin, 23–25 May 2012

Nutrition education and counselling provided during pregnancy: effects on maternal, neonatal and child health outcomes
Girard AW, Olude O.
Paediatr Perinat Epidemiol 2012;26:191-204

Pediatric patient-report outcomes and pediatric clinical trial design: challenges and solutions
Arbuckle R, Tassinari MS, Carson RT, Baird M.
Workshop presented at the International Society for Pharmacoeconomics and Outcomes Research, 17th Annual International Meeting, Washington, USA, 2–6 June 2012

Reliability and Validity of the Japanese Version of the Children’s Depression Rating Scale-Revised (CDRS-R). [in Japanese]
Denda K, Fujii Y, Nakato Y, Kako Y, Tanaka T, Crawford B.
Saishin Seishin Igaku (Newest Psychiatric Medicine) 2012; 17 (1): 51-58

Selection and development of Clinical Outcome Assessments (COAs) for use in pediatric clinical trials
Tassinari MS, Wang P, Abetz L, Patrick D, Rofail, D, Lee J, Papadopoulos E.
Oral presentation at Third Annual Patient-Reported Outcome Consortium workshop, Silver Spring, USA, 4 April 2012

The effects of household food production strategies on the health and nutrition outcomes of women and young children: a systematic review
Girard AW, Self JL, McAuliffe C, Olude O.
Paediatr Perinat Epidemiol 2012;26:205-22

The impact of Chronic Constipation (CC) on children and adolescents: results from qualitative research (FR)
Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff S J, Johnson J M, Bonner N.
Qual Life Res 2012;20:59

The impact of Irritable Bowel Syndrome with Constipation (IBS-C) on children and adolescents: results from qualitative research (FR)
Bonner N, Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff S J, Johnson J M.
Qual Life Res 2012;20:97

Communication, listening, cognitive and speech perception skills in children with Auditory Processing Disorder (APD) or Specific Language Impairment (SLI)
Ferguson MA, Hall RL, Riley A, Moore DR.
J Speech Lang Hear Res 2011;54:211-27

Paediatrics: an unexplored and rewarding population – the right methods make it easier
Abetz L.
Pharmaphorum 28 July 2011

Pediatric restless legs syndrome: analysis of symptom descriptions and drawings
Picchietti D L, Arbuckle R, Abetz L, Durmer J S, Ivanenko A, Owens J A, Croenlein J, Allen R P, Walters AS.
J Child Neurol 2011; 26:1365-76

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P.
Value Health 2011; 14:A497

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P.
Poster presented at the International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Training speech-in-noise perception in mainstream school children
Millward KE, Hall RL, Ferguson MA, Moore DR.
Int J Pediatr Otorhinolaryngol 2011; 75:1408

An introduction to pediatric patient-reported outcomes and pediatric clinical trial design
Arbuckle R, Abetz-Webb L, Carson R, Edelman Lewis B, Chassany O.
Workshop presented at the International Society for Quality of Life Research 17th Annual Conference, London, UK, 27–30 October 2010

Child and parent reports of symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston J M.
Value Health 2010;13:A373

Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): results of qualitative interviews
Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston JM.
Poster presented at ISPOR 13th Annual European Congress, 6-9 November 2010, Prague, Czech Republic

Cost-utility analysis of refinamide versus topiramate and lamotrine for the treatment of children with Lennox-Gastaut Syndrome in the United Kingdom
Verdian L, Yi Y.
Seizure 2010; 19(1):1-11

Development of a pediatric chronic constipation symptom measure: results of qualitative interviews with children and their parents
Abetz L, Arbuckle R, Carson R, Lewis B, Hunter L J, Shiff S J, Johnston J.
Qual Life Res 2010;19:141

Development of pediatric irritable bowel syndrome with constipation measures: results of qualitative interviews with children and their primary caregivers
Lewis B E, Arbuckle R, Abetz L, Carson R, Pompilus F, Johnston J, Shiff S.
Poster session presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21-23 October 2010

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz LA, Picchietti DL, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Bolton K, Moore A, Allen RP, Walters AS.
Oral presentation at: 33rd Sleep Conference, San Antonio, USA, June, 2010: A314

Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact
Arbuckle R, Abetz L, Durmer J, Ivaneko A, Owens J, Croenlein J, Bolton K, Moore A, Allen RP, Walters A, Picchietti D.
Sleep Medicine 2010;11:897-906

Pediatric restless legs syndrome: qualitative analysis of symptom descriptions and drawings
Picchietti DL, Arbuckle R, Abetz LA, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters AS.
Poster session presented at: 33rd Sleep Conference, San Antonio, USA, June, 2010: A341

Symptoms of pediatric chronic constipation: results of qualitative interviews with children and their primary caregivers
Carson RT, Abetz LN, Arbuckle R A, Lewis B, Bonner N, Shiff S, Johnston J.
Poster presented at: North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual meeting, New Orleans, USA, 21–23 October 2010

The symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews with children and their parents
Carson R, Arbuckle R, Abetz L, Lewis BE, Hunter L J, Johnston J, Shiff S J.
Qual Life Res 2010;19:6

Respiratory diseases

Cost–utility analysis of an intervention designed to reduce the critical handling error of insufficient inspiratory effort
Forster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop W
Eur J Health Econ (2018), 1-16. https://doi.org/10.1007/s10198-018-0974-2

Critical inhaler errors in asthma and COPD: A systematic review of impact on health economics
Usmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen R
Respiratory Research 2018, 19:10

Cost-utility analysis of a novel breath-triggered aerosol inhaler which has been designed to reduce the critical handling error of insufficient inspiratory effort
Forster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop W
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 20th Annual European Congress, Glasgow, Scotland, 4-8 November 2017

Health-related quality of life in South African patients with pulmonary tuberculosis
Kastien-Hilka T, Rosenkranz B, Sinanovic E, Bennett B
PLoS One. 2017 Apr 20;12(4):e0174605. doi: 10.1371/journal.pone.0174605. eCollection 2017

Respondent understanding and user experience with the Asthma Daily Symptom Diary (ADSD), a novel patient-reported outcome measure
Nelsen L M, Gater A, Bonner N, Hall R, Staunton H, Eremenco S, on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group
American Thoracic Society 2017 International Conference: Washington, DC 19th-24th May 2017

Preliminary psychometric evaluation of the Asthma Daily Symptom Diary (ADSD)
Nelsen LM, Gater A, Coon C, Bonner N, Hall R, Staunton H, Coons SJ, on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group
Poster presented at the American Thoracic Society International Conference, Washington D.C.,USA, May 19-24, 2017

Characterizing the patient experience of asthma COPD overlap syndrome (ACOS) and COPD
Nelsen LM, Tolley C, Gater A, Panter C, Pascoe S, Lee LA
Poster presented at the American Thoracic Society International Conference, Washington D.C.,USA, May 19-24, 2017

Assessing asthma symptoms in adolescents and adults: Qualitative research supporting development of the asthma daily symptom diary
Gater A, Nelson L, Fleming S, Lundy J, Bonner N, Hall R, Marshall C, Staunton H, Krishnan J, Stoloff S, Schatz M, Haughney J on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group.
Value in Health 2016, 9:440-450

Exploring the qualitative experience of chest congestion with children and adults to develop patient-reported outcome items to self-assess symptoms of the common cold
Grant L, Marshall C, Burrows K, Khammo N, Albrecht H, Arbuckle R, Shea T
Poster presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 21st Annual International Meeting, Washington DC, USA, 21-25 May 2016

FP/FORM versus FP/SAL within clinical practice: An updated budget impact analysis in asthma
Farrington E, Saunders A, Heron L, Dunlop W
Adv Ther 2016.  doi: 10.1007/s12325-016-0317-6. Epub 2016 Mar 26

Health-related quality of life and its association with medication adherence in active pulmonary tuberculosis – a systematic review of global literature with focus on South Africa
Kastein-Hilka T, Abulfathi A,  Rosenkranz B, Bennett B, Schwenkglenks M, Sinanovic E
Health Qual Life Outcomes 14,42, 2016

How to evaluate health-related quality of life and its association with medication adherence in pulmonary tuberculosis – Designing a prospective observational study in South Africa
Kastein-Hilka T, Rosenkranz B, Bennett B, Sinanovic E, Schwenkglenks M
Front. Pharmacology 31 May 2016

Structured review of health economic models in asthma
Enstone A, Price G, Viejo I, Dunlop W
Poster presented at International Society for Pharmacoeconomics and Outcomes Research (ISPOR), Vienna, Austria, 29th Oct-2nd Nov 2016

What represents a meaningful improvement in symptom-free days (SFD) and rescue-free days (RFD) for children? Perspectives from children and caregivers (Paediatric Asthma: Evaluation and Treatment)
Nelsen LM, Staunton H, Sully K, Khindri S, Svedsater H, Arbuckle R
Poster session presented at: ATS International Conference, San Francisco, USA, 13-18 May 2016

Development of a consensus statement for the definition, diagnosis, and treatment of acute exacerbations of idiopathic pulmonary fibrosis using the Delphi technique
Maher T, Whyte M, Hoyles R, Parfrey H, Ochiai Y, Mathieson N, Turnbull A, Williamson N, Bennett B
Advances in Therapy 2015;32:929-943

Patient reported burden of asthma on resource use and productivity across 11 countries in Europe
Fletcher M, Jha A, Dunlop W, Heron L, Wolfram V, Van der Molen T, Price D
Adv Ther. 2015 Apr;32(4):370-80. doi: 10.1007/s12325-015-0204-6. Epub 2015 Apr 26

The asthma working group: On the path to success
Nelsen L, Gater A, Papadopoulos E
Workshop presented at the 6th Annual Patient-Reported Outcome Consortium Workshop. Silver Spring, WA, April 29-30, 2015

The budget impact of an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK: Estimated impact on unscheduled healthcare costs and inhaler satisfaction
Nicolai J, Torvinen S, Howard DJ, Miles R, Greaney MH, Comberiati U, Plich A
Value in Health 2015 Nov;18(7):A497

The budget impact of an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK: Estimated impact on unscheduled healthcare costs and inhaler satisfaction
Nicolai J, Torvinen S, Howard DJ, Miles R, Greaney MH, Comberiati U, Plich A
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

The potential societal cost benefits of increasing patient satisfaction by using an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK
Nicolai J, Torvinen S, Miles R, Greaney MH, Howard DJ, Plich A
Value in Health 2015, Volume 18, Issue 7, A500

The potential societal cost benefits of increasing patient satisfaction by using an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK
Nicolai J, Torvinen S, Miles R, Greaney MH, Howard DJ, Plich A
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 18th Annual European Congress, Milan, Italy, 7-11 November 2015

Burden of asthma on resource and productivity in 6 European countries
Fletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price D
Eur Respir J 2014; 44(50):3816

Burden of asthma on resource and productivity in 6 European countries
Fletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price D
Poster session presented at: European Respiratory Society Congress, Munich, Germany, 6-10 September 2014

Burden of asthma on resource and productivity in distinct patient clusters
Price D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher M
Eur Respir J 2014; 44(58):3020

Burden of asthma on resource and productivity in distinct patient clusters
Price D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher M
Poster session presented at: European Respiratory Society Congress, Munich, Germany, 6-10 September 2014

Developing a pediatric COA measurement strategy: A case study in asthma
Arbuckle R
Oral presentation presented at: 5th Annual Critical Path Institute Patient-Reported Outcome (PRO) Consortium Workshop, Silver Spring, USA, April 29-30, 2014

Development of the initial version of the Asthma Daily Symptom Diary
Mocarski M, Gater A, Fleming S, Nelsen LM, Coons SJ on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group (Asthma WG)
Poster presented at the American Thoracic Society International Conference San Diego, CA, USA, May 16-21, 2014

Device handling errors and the impact on quality of life and healthcare resource use in asthmatic patients
Jha A, Heron L, Marshall J, Dunlop W
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 17th Annual European Congress, Amsterdam, Netherlands, 8-12 November 2014

Identifying and measuring the core symptoms reported by persons with asthma: A review of the existing qualitative literature and patient-reported outcome measures
Nelsen LM, Gater A, Hall R, Coons SJ on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group (Asthma WG)
Poster presented at the American Thoracic Society International Conference San Diego, CA, USA, May 16-21, 2014

Budget impact analysis of a fixed-dose combination of fluticasone propionate and formoterol fumarate (FP/FORM) in a pressurized metered-dose inhaler (pMDI) for asthma
Dunlop W, Heron L, Fox G, Greaney M
Adv Ther 2013;30(10);933-944

Budget impact analysis of a new fixed-dose combination inhaler for a clinical commissioning group within the National Health Service in England
Dunlop W, Heron L, Fox G, Greaney M
Poster session presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR), 16th Annual European Congress, Dublin, Ireland, 2-6 November 2013

Validation of the COPD Population Screener (COPD-PS) and establishment of diagnostic cut-points in Japan
Inoue H, Momi H, Tsukuya G, Fukuyama S, Samukawa T, Kiyohara Y, Nakamura T, Crawford B, Ichinose M, Matsumoto K, Nakanishi N, on behalf of the Hisayama Pulmonary Physiology Study Group
Poster session presented at: American Thoracic Society , Philadelphia, USA, 17 – 22 May 2013

Patients’ experience of asthma control and clinical guidelines: Perspectives from a qualitative study
Rudell K, Hareendran A, Bonner N, Arbuckle R, Burbridge C, Abetz L
Respir Med 2012;106:909

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P
Value Health 2011;14:A497

Testing of a conceptual model of asthma in adolescents
Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P
Poster presented at the  International Society for Pharmacoeconomics and Outcomes Research (ISPOR). Madrid, Spain, 2011

Responsiveness of the Cough and Sputum Assessment Questionnaire (CASA-Q) in exacerbations of COPD and chronic bronchitis
Monz BU, Sachs P, McDonald J, Crawford B, Nivens MC, Tetzlaff K
Respir Med 2010;104:534

Responsiveness of the Cough and Sputum Assessment Questionnaire (CASA-Q) in patients with COPD and chronic bronchitis recovering from acute exacerbations
Tetzlaff K, Sachs P, McDonald J, Crawford B, Nivens C, Monz B
Poster session presented at: American Thoracic Society, San Diego, California, 15–20 May 2009