Professor Jill Carlton
BMedSci (Sheffield), MMedSci (Sheffield), PhD (Sheffield)
Population Health, School of Medicine and Population Health
Professor of Health Outcomes Research
+44 114 222 0799
Full contact details
Population Health, School of Medicine and Population Health
Regent Court (ScHARR)
30 Regent Street
Sheffield
S1 4DA
- Profile
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I qualified as an orthoptist and worked clinically in the NHS before taking up a research post at the University of Sheffield in 2005.
My experiences as a health care professional led to an interest in evidence-based research that can make a difference to those living with health conditions. I completed my PhD, funded through an NIHR Fellowship award in 2013.
I was appointed Professor in Health Outcomes Research in 2024, and I lead research in measuring and valuing health and quality of life.
- Research interests
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I lead and undertake research and consultancy projects in the development and evaluation of patient-reported outcome measures (PROMs) and outcomes research.
My research has generated evidence used in Health Technology Assessment (HTA) submissions to NICE that are used to determine the effective use of these technologies in the NHS and has been used internationally to generate evidence for HTA submissions to other international agencies.
My research has improved standards in healthcare and been cited in clinical guidelines nationally and internationally and has led to the initiation and refinement of childhood screening programs in Europe.
My research has generated preference-based measures that are licensed for non-commercial and commercial use via Licensing at the University of Sheffield, and via Oxford University Innovations, including mental health-specific (ReQoL), and Duchenne muscular dystrophy-specific (DMD-QoL and DMD-QoL-8D)
My research interests include:
- Measuring and valuing health and quality of life
- Measuring and valuing health-related quality of life in children, rare conditions, and life-limiting conditions
- Development and evaluation of patient-reported outcomes (PROMs)
- Incorporating lived experience perspectives in research through collaborative engagement on health-related quality of life
- Publications
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Show: Featured publications All publications
Featured publications
Journal articles
- A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Quality of Life Research, 32(1), 225-236. View this article in WRRO
- The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB). Journal of Patient-Reported Outcomes, 6(1). View this article in WRRO
- Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN. Health and Quality of Life Outcomes, 20(1). View this article in WRRO
- The EQ-HWB: overview of the development of a measure of health and wellbeing and key results. Value in Health, 25(4), 482-491. View this article in WRRO
- Development of a new quality of life measure for Duchenne muscular dystrophy using mixed methods. Neurology, 96(19), e2438-e2450. View this article in WRRO
- Deriving a preference-based measure for people with Duchenne Muscular Dystrophy from the DMD-QoL. Value in Health, 24(10), 1499-1510. View this article in WRRO
- The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods. Diabetologia.
- A Qualitative Study of the Views of Health and Social Care Decision-makers on the Role of Wellbeing in Resource Allocation Decisions in the UK. Economies, 7(1). View this article in WRRO
- The clinical effectiveness and cost-effectiveness of screening programmes for amblyopia and strabismus in children up to the age of 4-5 years: a systematic review and economic evaluation.. Health Technol Assess, 12(25), iii-194.
- Including young children in the development and testing of patient reported outcome (PRO) instruments: a scoping review of children’s involvement and qualitative methods. The Patient - Patient-Centered Outcomes Research. View this article in WRRO
Website content
- http://eprints.whiterose.ac.uk/11040/
All publications
Journal articles
- Measuring Health-Related Quality of Life in Amyotrophic Lateral Sclerosis. Neurology, 103(2).
- Measuring health related quality of life (HRQoL) in Lysosomal Storage Disorders (LSDs): a rapid scoping review of available tools and domains. Orphanet Journal of Rare Diseases, 19. View this article in WRRO
- Correction to ‘Producing a preference‐based quality of
LIFE measure to quantify the impact ofHYPOGLYCAEMIA on people living with diabetes: A mixed‐methods research protocol’CarltonJ, PowellP, RowenD, BroadleyM, PouwerF, SpeightJ, HellerS, GallMA, RosilioM, ChildCJ, CominsJ, McCrimmonRJ, deGalanB, BrazierJ; Hypo‐RESOLVE CONSORTIUM. Producing a preference‐based quality of LIFE measure to quantify the impact of HYPOGLYCAEMIA on people living with diabetes: a mixed‐methods research protocol. Diabet Med2023 Mar;40(3):e15007. doi: 10.1111/dme.15007.. Diabetic Medicine, 41(8). - Development and valuation of a preference-weighted measure in Age-Related Macular Degeneration from the Vision Impairment in Low Luminance (VILL) questionnaire – A MACUSTAR report. Value in Health. View this article in WRRO
- PCR65 Assessment of the EQ-5D and DMD-QoL for Duchenne Muscular Dystrophy: A Patient and Caregiver Study. Value in Health, 26(12), S461-S461.
- HTA213 Undertaking Studies to Inform Public Policy: Managing Data Collection to Ensure Data Quality in the EQ-5D-5L UK Valuation Through the Use of Independent Quality Control Assessments. Value in Health, 26(12), S361-S361.
- Symptom Burden in Idiopathic Multicentric Castleman Disease: Protocol for the Development of a Novel Standardized Patient Reported Outcome Measure. Blood, 142(Supplement 1), 7342-7342.
- Characteristics and Spatial Distribution of Structural Features in Age-Related Macular Degeneration. Ophthalmology Retina, 7(5), 420-430.
- A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Quality of Life Research, 32(1), 225-236. View this article in WRRO
- The cost-effectiveness of different visual acuity screening strategies in three European countries : a microsimulation study. Preventive Medicine Reports, 28.
- The impact of hypoglycaemia on quality of life among adults with type 1 diabetes : results from “YourSAY: Hypoglycaemia”. Journal of Diabetes and its Complications.
- A comprehensive overview of vision screening programmes across 46 countries. British and Irish Orthoptic Journal, 18(1), 27-47.
- The role of patient and public involvement and engagement (PPIE) within the development of the EQ Health and Wellbeing (EQ-HWB). Journal of Patient-Reported Outcomes, 6(1). View this article in WRRO
- Measuring carer quality of life in Duchenne muscular dystrophy: a systematic review of the reliability and validity of self-report instruments using COSMIN. Health and Quality of Life Outcomes, 20(1). View this article in WRRO
- The EQ-HWB: overview of the development of a measure of health and wellbeing and key results. Value in Health, 25(4), 482-491. View this article in WRRO
- Generation, selection, and face validation of items for a new generic measure of quality of life : the EQ Health and Wellbeing. Value in Health.
- Qualitative Review on Domains of Quality of Life Important for Patients, Social Care Users, and Informal Carers to Inform the Development of the EQ Health and Wellbeing. Value in Health.
- Unmet support needs relating to hypoglycaemia among adults with type 1 diabetes: Results of a multi‐country web‐based qualitative study. Diabetic Medicine. View this article in WRRO
- ‘Never again will I be carefree’ : a qualitative study of the impact of hypoglycemia on quality of life among adults with type 1 diabetes. BMJ Open Diabetes Research & Care, 9(1).
- Seeing beyond anatomy : quality of life with geographic atrophy. Ophthalmology and Therapy.
- Development of a new quality of life measure for Duchenne muscular dystrophy using mixed methods. Neurology, 96(19), e2438-e2450. View this article in WRRO
- Deriving a preference-based measure for people with Duchenne Muscular Dystrophy from the DMD-QoL. Value in Health, 24(10), 1499-1510. View this article in WRRO
- Acceptability of childhood screening: a systematic narrative review. Public Health, 193, 126-138. View this article in WRRO
- Challenges, facilitators and barriers to screening study participants in early disease stages-experience from the MACUSTAR study. BMC Medical Research Methodology, 21. View this article in WRRO
- The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods. Diabetologia.
- Criteria for item selection for a preference-based measure for use in economic evaluation. Quality of Life Research. View this article in WRRO
- Scope and costs of autorefraction and photoscreening for childhood amblyopia—a systematic narrative review in relation to the EUSCREEN project data. Eye.
- Measuring quality of life in Duchenne muscular dystrophy : a systematic review of the content and structural validity of commonly used instruments. Health and Quality of Life Outcomes, 18. View this article in WRRO
- Clinical study protocol for a low-interventional study in intermediate age-related macular degeneration developing novel clinical endpoints for interventional clinical trials with a regulatory and patient access intention—MACUSTAR. Trials, 21(1).
- Assessment of the psychometric properties and refinement of the health and self-management in diabetes questionnaire (HASMID). Health and Quality of Life Outcomes, 18(1). View this article in WRRO
- Reducing the burden of hypoglycaemia in people with diabetes through increased understanding : design of the Hypoglycaemia REdefining SOLutions for better liVEs (Hypo‐RESOLVE) project. Diabetic Medicine. View this article in WRRO
- An emerging framework for fully incorporating public involvement (PI) into patient-reported outcome measures (PROMs). Journal of Patient-Reported Outcomes, 4(1). View this article in WRRO
- Patient perspectives in geographic atrophy (GA) : exploratory qualitative research to understand the impact of GA for patients and their families. British and Irish Orthoptic Journal, 15(1), 133-141. View this article in WRRO
- PROM validation using paper-based or online surveys : data collection methods affect the sociodemographic and health profile of the sample. Value in Health, 22(8), 845-850. View this article in WRRO
- Comparison of the CAT-QoL and PedsQLTM instruments in measuring quality of life in amblyopia treatment: preliminary results. Strabismus. View this article in WRRO
- Refinement of the Child Amblyopia Treatment Questionnaire (CAT-QoL) using Rasch analysis.. Strabismus. View this article in WRRO
- Public Involvement in health outcomes research: lessons learnt from the development of the Recovering Quality of Life (ReQoL) measures.. Health and Quality of Life Outcomes, 17. View this article in WRRO
- Producing a preference-based quality of life measure for people with Duchenne muscular dystrophy: A mixed-methods study protocol. BMJ Open, 9. View this article in WRRO
- A Qualitative Study of the Views of Health and Social Care Decision-makers on the Role of Wellbeing in Resource Allocation Decisions in the UK. Economies, 7(1). View this article in WRRO
- MACUSTAR: Entwicklung und klinische Validierung von funktionellen, strukturellen und patientenberichteten Endpunkten bei intermediärer altersabhängiger Makuladegeneration. Der Ophthalmologe, 116(12), 1186-1193.
- MACUSTAR: Development and Clinical Validation of Functional, Structural, and Patient-Reported Endpoints in Intermediate Age-Related Macular Degeneration. Ophthalmologica, 241(2), 61-72.
- A review of quality of life themes in Duchenne muscular dystrophy for patients and carers. Health and Quality of Life Outcomes, 16. View this article in WRRO
- Estimating a Preference-Based Single Index Measuring the Quality-of-Life Impact of Self-Management for Diabetes. Medical Decision Making, 38(6), 699-707. View this article in WRRO
- Integrating qualitative and quantitative data in the development of outcome measures: the case of the Recovering Quality of Life (ReQoL) measures in mental health populations. International Journal of Environmental Research and Public Health, 15(7). View this article in WRRO
- Recovering Quality of Life (ReQoL): a new generic self-reported outcome measure for use with people experiencing mental health difficulties. The British journal of psychiatry : the journal of mental science, 212(1), 42-49. View this article in WRRO
- Using a Discrete Choice Experiment Involving Cost to Value a Classification System Measuring the Quality-of-Life Impact of Self-Management for Diabetes. Value in Health, 21(1), 69-77. View this article in WRRO
- Developing a questionnaire to determine the impact of self-management in diabetes: giving people with diabetes a voice. Health and Quality of Life Outcomes, 15. View this article in WRRO
- Women’s experiences of ovulation testing: a qualitative analysis. Reproductive Health, 12(1). View this article in WRRO
- Inventory of current EU paediatric vision and hearing screening programmes. Journal of Medical Screening, 22(2), 55-64. View this article in WRRO
- Letters to the editor. Strabismus, 22(2), 86-87.
- Health state utilities in patients with diabetic retinopathy, diabetic macular oedema and age-related macular degeneration: a systematic review.. BMC Ophthalmol, 13, 74.
- Developing the draft descriptive system for the child amblyopia treatment questionnaire (CAT-Qol): a mixed methods study. HEALTH AND QUALITY OF LIFE OUTCOMES, 11.
- Identifying potential themes for the Child Amblyopia Treatment Questionnaire.. Optom Vis Sci, 90(8), 867-873.
- Estimating quality-adjusted life years from patient-reported visual functioning. Eye (Basingstoke), 26(10), 1295-1301.
- Health-related quality of life measures (HRQoL) in patients with amblyopia and strabismus: a systematic review.. Br J Ophthalmol, 95(3), 325-330.
- Screening for Amblyopia. Journal of Pediatric Ophthalmology and Strabismus.
- General health-related quality of life in preschool children with strabismus or amblyopia. Evidence-Based Ophthalmology, 12(4), 212-213.
- View this article in WRRO
- Informing disinvestment through cost-effectiveness modelling: is lack of data a surmountable barrier?. Appl Health Econ Health Policy, 7(1), 1-9.
- Valuing Condition-Specific Health States Using Simulation Contact Lenses.. Value Health(5), 793-799.
- View this article in WRRO
- The clinical effectiveness and cost-effectiveness of screening programmes for amblyopia and strabismus in children up to the age of 4-5 years: a systematic review and economic evaluation.. Health Technol Assess, 12(25), iii-194.
- Determinants of health related quality of life and health state utility in patients with age related macular degeneration: the association of contrast sensitivity and visual acuity.. Qual Life Res, 16(3), 533-543.
- The impact of age-related macular degeneration on health status utility values.. Invest Ophthalmol Vis Sci, 46(11), 4016-4023.
- A population-level post-screening treatment cost framework to help inform vision screening choices for children under the age of seven. Strabismus, 1-16.
- Retest variability and patient reliability indices of quantitative fundus autofluorescence in age-related macular degeneration: a MACUSTAR study report. Scientific Reports, 13(1).
- Including young children in the development and testing of patient reported outcome (PRO) instruments: a scoping review of children’s involvement and qualitative methods. The Patient - Patient-Centered Outcomes Research. View this article in WRRO
- Psychometric properties of an innovative smartphone application to investigate the daily impact of hypoglycemia in people with type 1 or type 2 diabetes: The Hypo-METRICS app. PLOS ONE, 18(3), e0283148-e0283148.
- Author Correction: Comparability of automated drusen volume measurements in age-related macular degeneration: a MACUSTAR study report. Scientific Reports, 13(1).
- Comparability of automated drusen volume measurements in age-related macular degeneration: a MACUSTAR study report. Scientific Reports, 12(1).
- Availability of data for cost-effectiveness comparison of child vision and hearing screening programmes. Journal of Medical Screening, 096914132211266-096914132211266.
- Relative ellipsoid zone reflectivity and its association with disease severity in age-related macular degeneration: a MACUSTAR study report. Scientific Reports, 12(1).
- Response to ‘Vision Screening’. British and Irish Orthoptic Journal, 9(0), 81-81.
- View this article in WRRO
- View this article in WRRO
Chapters
- Activities of Daily Vision Scale, Encyclopedia of Quality of Life and Well-Being Research (pp. 30-32). Springer International Publishing
- Activities of Daily Vision Scale, Encyclopedia of Quality of Life and Well-Being Research (pp. 1-4). Springer International Publishing
- Activities of Daily Vision Scale, Encyclopedia of Quality of Life and Well-Being Research (pp. 20-22). Springer Netherlands
- Abandonment, Encyclopedia of Quality of Life and Well-Being Research (pp. 1-1). Springer Netherlands
- The Value of Screening for Amblyopia Revisited, Essentials in Ophthalmology (pp. 95-111). Springer Berlin Heidelberg
- The value of screening for amblyopia revisited In Lorenz B & Brodsky M (Ed.), Pediatric Ophthalmology, Neuro-Ophthalmology, Genetics: Strabismus - New Concepts in Pathophysiology, Diagnosis and Treatment Springer View this article in WRRO
Conference proceedings papers
- P12 Quality of life and its associated factors in autoimmune hepatitis: a cross-sectional study. Abstracts
- P182 Quality of life in patients with autoimmune hepatitis: a review of patient-reported outcome measures. Posters
- PB4 PROJECT HERCULES: A PATIENT LED PARADIGM IN EVIDENCE GENERATION FOR HTA IN DUCHENNE MUSCULAR DYSTROPHY. Value in Health, Vol. 23 (pp S13-S13)
- PND21 PROJECT HERCULES: A NEW PARADIGM FOR PATIENT-CENTRED COLLABORATION IN HTA. Value in Health, Vol. 22 (pp S740-S740)
- PRO130 PROJECT HERCULES: CONSTRUCTION OF A NEW PREFERENCE-BASED MEASURE OF QUALITY OF LIFE FOR DUCHENNE MUSCULAR DYSTROPHY (DMD). Value in Health, Vol. 22 (pp S865-S865)
- EP.41Project HERCULES: could international collaboration on value assessment change clinical practice?. Neuromuscular Disorders, Vol. 29 (pp S112-S113)
- View this article in WRRO
- PSY215 - MEASURING QUALITY OF LIFE FOR ECONOMIC EVALUATION IN DUCHENNE MUSCULAR DYSTROPHY (DMD) FROM CHILDHOOD TO ADULTHOOD: PROTOCOL FOR A NEW PREFERENCE-BASED MEASURE. Value in Health, Vol. 21 (pp S473-S473)
- Developing Content for a New Generic Qaly Measure: Results from a Qualitative Literature Review (E-Qaly Project). Value in Health, Vol. 21 (pp S110-S110)
- The importance of content and face validity in instrument development: lessons learnt from service users when developing the Recovering Quality of Life measure (ReQoL). Quality of Life Research (pp 1-10) View this article in WRRO
- Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Oxford 2017: Advances in Patient Reported Outcomes Research. Health and Quality of Life Outcomes, Vol. 15(S1) View this article in WRRO
- View this article in WRRO
- Proceedings of Patient Reported Outcome Measure’s (PROMs) Conference Sheffield 2016: advances in patient reported outcomes research. Health and Quality of Life Outcomes, Vol. 14(Suppl 1), 9 June 2016 - 9 June 2016. View this article in WRRO
- View this article in WRRO
- Constructing Classification System For A New Qaly Measure In Mental Health: Recovering Quality Of Life (Reqol). Value in Health, Vol. 19(3) (pp A190-A190) View this article in WRRO
Reports
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- BIOS Screening Audit report 2016-2017
- BIOS Screening Audit report 2015-2016 View this article in WRRO
Website content
- http://eprints.whiterose.ac.uk/11040/
- http://eprints.whiterose.ac.uk/11196/
- http://eprints.whiterose.ac.uk/11028/
Posters
Working papers
- View this article in WRRO
Datasets
- Psychometric data for 'A new quality of life questionnaire for use in Duchenne muscular dystrophy: the DMD-QoL'.
- Supplementary files for 'A new quality of life questionnaire for use in Duchenne muscular dystrophy: the DMD-QoL'.
Other
- Correction to: The suitability of patient-reported outcome measures used to assess the impact of hypoglycaemia on quality of life in people with diabetes: a systematic review using COSMIN methods.. Diabetologia.
- FDA on PROMs: Two important points. BMJ (Online), 341(7776), 746.
- BIOS VISION SCREENING AUDIT: Academic Year 2017-2018.
Preprints
- Health-related quality of life in pulmonary arterial hypertension trials: a review and conceptual map, Cold Spring Harbor Laboratory.
- A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Quality of Life Research, 32(1), 225-236. View this article in WRRO
- Research group
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I am a member of the SCHARR Outcomes group and have served as an Associate Editor for the Journal of Patient-Reported Outcomes.
PhD students
- Victoria Gale
- Rosie Bamber
- Teaching interests
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My teaching interests lie in health services research, in particular ethical issues involved in health services research. I teach on three masters programmes:
- MSc Health Economics and Decision Modelling (HAR669 module: Health Research Methods)
- MSc Economics and Health Economics (HAR6240 module: Research Methods in Health). I am joint Module Coordinator for HAR6240.
- MSc International Health Technology Assessment, Pricing and Reimbursement (HAR6118: Utility and Patient-reported Outcomes Data in Health Technology Assessment)
- Professional activities and memberships
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- SCHARR Fellowships and Studentships Officer
- Member of SCHARR Postgraduate Research Committee
- Member of SCHARR Research Committee
- Member of HEDS Research Functional Working Group
- Member of HEDS Communications and Impact Functional Working Group
- Member of HEDS Newsletter Development Group
- Fellowships advisor for NIHR Yorkshire and Humber RDS
- Member of the Editorial Board of the British & Irish Orthoptic Journal
- Member of the British and Irish Orthoptic Society
- Member of the British and Irish Orthoptic Society Vision Screening Special Interest Group
- Member of the British Isles Paediatric Ophthalmology & Strabismus Association