Therapeutic area

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

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