Professor Jill Carlton
BMedSci (Sheffield), MMedSci (Sheffield), PhD (Sheffield)
School of Medicine and Population Health
Professor of Health Outcomes Research
j.carlton@sheffield.ac.uk
+44 114 222 0799
+44 114 222 0799
+44 114 222 0749
(Fax)
Regent Court (ScHARR)
Full contact details
Professor Jill Carlton
School of Medicine and Population Health
Regent Court (ScHARR)
30 Regent Street
Sheffield
S1 4DA
School of Medicine and Population Health
Regent Court (ScHARR)
30 Regent Street
Sheffield
S1 4DA
- Profile
-
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
-
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
-
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
- Amblyopia and quality of life: a systematic review. Retrieved from http://eprints.whiterose.ac.uk/11040/
All publications
Journal articles
- Comparability, acceptability and longitudinal adherence with digital emPHasis-10 in pulmonary arterial hypertension. European Respiratory Journal. View this article in WRRO
- Determining the content validity of the EQ-5D-5L, EQ-5D-Y-3L, and CHU9D instruments for assessing generic child and adolescent health-related quality of life: a qualitative study. Patient. View this article in WRRO
- Selection of patient-reported outcome measures in pulmonary arterial hypertension clinical trials: a systematic review, meta-analysis and health-related quality of life framework. European Respiratory Review, 34(176), 250006-250006.
- Psychometric performance of a new condition-specific preference-weighted measure, VILL-UI, and EQ-5D-5L in patients with age-related macular degeneration: A MACUSTAR Study Report. Value in Health, 27(12).
- Understanding the health-related quality of life impacts of caring for children and adolescents with rare progressive life-limiting conditions: key challenges and future research priorities. Quality of Life Research.
- Research recommendations from the 2024 Breakthrough T1D, Diabetes UK and Kidney Research UK, diabetes and kidney disease expert workshop.. Diabet Med, e70013.
- 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.
- 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
- Cost‐effectiveness comparison of childhood vision and hearing screening programmes throughout Europe (EUSCREEN Study). Acta Ophthalmologica, 96(12), 3-49.
- 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.
- The BIOJ: Evolution or Revolution?. Br Ir Orthopt J, 10, 66-67.
- The BIOJ: a comparative review. Br I Orthopt J, 10, 3-10.
- 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.
- What is vision screening? And more importantly, what is it not?. British and Irish Orthoptic Journal, 8, 71-73.
- General health-related quality of life in preschool children with strabismus or amblyopia. Evidence-Based Ophthalmology, 12(4), 212-213.
- Clinicians’ perspectives of health related quality of life (HRQoL) implications of amblyopia: a qualitative study. British and Irish Orthoptic Journal, 8, 18-23. View this article in WRRO
- Comment on FDA guidance for patient-reported outcome. BMJ, 340, 2921-2921.
- 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.
- Screening for amblyopia and strabismus in children aged 4-5 years: where do we go from here?. British and Irish Orthoptic Journal, 6, 15-21. 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.
- Health-related quality of life of informal carers in ALS: a systematic review of person reported outcome measures. Quality of Life Research.
- Young Children (6-7 years) can Meaningfully Participate in Cognitive Interviews Assessing
Comprehensibility in Health-Related Quality of Life Domains: A Qualitative Study. Quality of Life Research.
- Validating candidate endpoints for intermediate age-related macular degeneration trials in a multi-centre setting—lessons from the MACUSTAR study. Eye.
- The comprehensibility continuum: a novel method for analysing comprehensibility of patient reported outcome measures. Quality of Life Research.
- Re: the Upper Extremity Functional Scale for Prosthesis Users (UEFS-P): subscales for one and two-handed tasks. Disability and Rehabilitation, 1-2.
- Deriving a Preference-Weighted Measure for People with Hypoglycaemia from the Hypo-RESOLVE-QoL. Value in Health.
- Development of a novel patient reported outcome measure for health-related quality of life in amyotrophic lateral sclerosis (PROQuALS): study protocol. Health and Quality of Life Outcomes, 22(1).
- 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).
- UK valuation of EQ-5D-5L, a generic measure of health-related quality of life: A study protocol. Value in Health.
- 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).
- Producing a preference-based quality of life measure to quantify the impact of hypoglycaemia on people living with diabetes: a mixed-methods research protocol. Diabetic Medicine.
- 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).
- Assessing the comparative feasibility, acceptability and equivalence of videoconference interviews and face-to-face interviews using the time trade-off technique. Social Science and Medicine.
- Disease-specific assessment of Vision Impairment in Low Luminance (VILL) in age-related macular degeneration – a MACUSTAR study report. British Journal of Ophthalmology.
- Response to ‘Vision Screening’. British and Irish Orthoptic Journal, 9(0), 81-81.
- Screening for amblyopia: a contentious issue. Journal of Pediatric Ophthalmology and Strabismus. View this article in WRRO
- What is the best approach to adopt for identifying the domains for a new measure of health, social care and carer-related quality of life to measure quality adjusted life years? Application to the development of the EQ-HWB?. European Journal of Health Economics.
- Measuring What Matters – Little Evidence Supporting the Content Validity of EQ-5D in People with Duchenne Muscular Dystrophy and Their Caregivers. Medical Decision Making. View this article in WRRO
- Development of a New Health-Related Quality of Life Measure for People Living with Diabetes Who Experience Hypoglycaemia: The Hypo-RESOLVE QoL.
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
- EE391 Psychometric Performance of EQ-5D-5L and VILL-UI, a New Condition-Specific Preference-Weighted Measure, in Patients With Age-Related Macular Degeneration: A Macustar Study Report. Value in Health, Vol. 27(12) (pp S132-S132)
- Vision Impairment in Low Luminance Reports and Progression of Intermediate Age-Related Macular Degeneration in the MACUSTAR Study Cohort. INVESTIGATIVE OPHTHALMOLOGY & VISUAL SCIENCE, Vol. 65(7)
- Who Should Value Health-Related Quality of Life in Children? Results from a Dual Country Survey. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S45-S45)
- Quantifying the impact of symptoms on health-related quality of life in idiopathic multicentric Castleman disease: Protocol for a novel outcome measure. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S174-S175)
- Assessing the psychometric performance of a new condition-specific preference-weighted measure, VILL-UI, and EQ-5D-5L in patients with age-related macular degeneration: A MACUSTAR Study Report. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S213-S213)
- Patient-relevance of visual function decline in intermediate age-related macular degeneration a MACUSTAR study report. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S75-S75)
- Fostering collaborative engagement when valuing healthrelated quality of life. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S216-S216)
- Eliciting preferences of people living with diabetes using the Hypo-RESOLVE-QoL-8D to determine the impact of hypoglycaemia to inform economic evaluation. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S95-S95)
- Measuring informal carer health-related quality of life in motor neuron disease: A systematic review of the content validity of self-report instruments using COSMIN. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S202-S202)
- Developing Methods of Cognitive Interviewing for Measures of Health-related Quality of Life for Young Children: A 'Solution-Focussed' Approach. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S139-S140)
- Developing a novel outcome measure to assess the impact of amyotrophic lateral sclerosis (ALS) on health-related quality of life (HRQoL): A study protocol. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S111-S111)
- Changes are needed to adequately assess health-related quality of life (HRQoL) in informal carers of children with rare progressive life-limiting conditions: key learnings from a collaborative workshop. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S23-S23)
- Can Young Children Participate Meaningfully in Cognitive Interviews of Health-related Quality of Life Measures? An Exploration of Feasibility and a Novel Analytic Approach. QUALITY OF LIFE RESEARCH, Vol. 33 (pp S46-S46)
- CURRENT METHODS OF ASSESSING HEALTH-RELATED QUALITY OF LIFE (HRQoL) IN INFORMAL CARERS OF CHILDREN WITH RARE PROGRESSIVE LIFE-LIMITING CONDITIONS ARE INADEQUATE: FINDINGS FROM A COLLABORATIVE PROJECT HERCULES WORKSHOP. VALUE IN HEALTH, Vol. 27(12)
- The Hypo-RESOLVE QoL: a new patient reported outcome (PRO) to quantify the impact of hypoglycaemia on health-related quality of life. DIABETOLOGIA, Vol. 66(SUPPL 1) (pp S427-S427)
- 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, Vol. 26(12) (pp S361-S361)
- ASSESSMENT OF THE EQ-5D AND DMD-QOL FOR DUCHENNE MUSCULAR DYSTROPHY: A PATIENT AND CAREGIVER STUDY. VALUE IN HEALTH, Vol. 26(12) (pp S461-S461)
- P12 Quality of life and its associated factors in autoimmune hepatitis: a cross-sectional study. Abstracts
- PSYCHOMETRIC PROPERTIES OF HYPO-METRICS: A SMARTPHONE APPLICATION TO INVESTIGATE THE DAILY IMPACT OF HYPOGLYCAEMIA. DIABETES TECHNOLOGY & THERAPEUTICS, Vol. 24 (pp A216-A217)
- Proceedings of the Patient Reported Outcome Measures (PROMs) Research Conference, Sheffield 2021 16-17 June 2021, Virtual, Sheffield, UK Abstracts. QUALITY OF LIFE RESEARCH, Vol. 31(SUPPL 1) (pp 1-1)
- Availability of data for cost-effectiveness comparison of vision screening programmes. INVESTIGATIVE OPHTHALMOLOGY & VISUAL SCIENCE, Vol. 63(7)
- The Hypo-RESOLVE quality of life (QoL) instrument: A study protocol for the development of a new preference-based measure designed to capture the impact of hypoglycaemia on QoL. QUALITY OF LIFE RESEARCH, Vol. 31 (pp S91-S91)
- Exploring the face and content validity of a new patient-reported outcome measure of the impact of hypoglycaemia on quality of life: Results of the Hypo-RESOLVE QoL cognitive interview study. QUALITY OF LIFE RESEARCH, Vol. 31 (pp S59-S59)
- ACCESSIBILITY AND INCLUSIVITY FOR PEOPLE PARTICIPATING IN HEALTH PREFERENCE RESEARCH: HOW DOES THE MODE OF ADMINISTERING AN INTERVIEW IMPACT ON TIME TRADE-OFF STUDIES?. VALUE IN HEALTH, Vol. 25(12) (pp S322-S323)
- Deriving a preference based measure for age-related macular degeneration from the VILL-33: A MACUSTAR Study Report. QUALITY OF LIFE RESEARCH, Vol. 31 (pp S76-S76)
- P182 Quality of life in patients with autoimmune hepatitis: a review of patient-reported outcome measures. Posters
- Psychometric properties of the Vision Impairment in Low Luminance (VILL) questionnaire in age-related macular degeneration in the MACUSTAR study. INVESTIGATIVE OPHTHALMOLOGY & VISUAL SCIENCE, Vol. 62(8)
- The use of collaborative patient engagement in the development of a PROM to assess the impact of hypoglycaemia on quality of life as part of the Hypo-RESOLVE project: Patient and researcher perspectives. QUALITY OF LIFE RESEARCH, Vol. 30(SUPPL 1) (pp S29-S29)
- Quality of life is impaired in both physical and mental health domains, in patients with Autoimmune Hepatitis: A systematic review and meta-analysis. JOURNAL OF HEPATOLOGY, Vol. 75 (pp S423-S424)
- Measuring carer quality of life in Duchenne muscular dystrophy: A systematic review of the reliability and validity of self-report instruments using COSMIN. QUALITY OF LIFE RESEARCH, Vol. 30(SUPPL 1) (pp S111-S112)
- "I just literally want, like, one day where it's like, I'm not having to worry about anything": The impact of hypoglycaemia on quality of life in people living with diabetes (a Hypo-RESOLVE study). QUALITY OF LIFE RESEARCH, Vol. 30(SUPPL 1) (pp S35-S36)
- 26th Annual Conference of the International Society for Quality
of Life Research. Quality of Life Research, Vol. 28(S1) (pp 1-190)
- Optimising patient and public involvement in Patient Reported Outcome Measure (PROM) development. QUALITY OF LIFE RESEARCH, Vol. 28 (pp S38-S39)
- How to capture fluctuating health impairments in people with multiple sclerosis: development of an intensive longitudinal assessment of the EQ-5D-5L. QUALITY OF LIFE RESEARCH, Vol. 28 (pp S164-S164)
- EUSCREEN study, stage 1 : data collection on vision and hearing screening programs in 40 European countries and Turkey, Israel, Russia, Malawi, Ruanda, Suth-Africa and India. Investigative Ophthalmology & Visual Science, Vol. 60(9). Vancouver, Canada, 28 April 2019 - 2 May 2019. View this article in WRRO
- The new health and self-management in diabetes (HASMID-10) measure: assessing psychometric performance in a large longitudinal survey. QUALITY OF LIFE RESEARCH, Vol. 27 (pp S39-S39)
- Extending the QALY: developing and testing the proposed items for a new generic measure - results from qualitative review and face validity with patients, social care users and carers. QUALITY OF LIFE RESEARCH, Vol. 27 (pp S189-S189)
- 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
- Cost-effectiveness comparison of childhood vision and hearing screening programmes throughout Europe (EUSCREEN Study). ACTA OPHTHALMOLOGICA, Vol. 96 (pp 12-12)
- A critical assessment of service user involvement in designing the ReQoL PROM. QUALITY OF LIFE RESEARCH, Vol. 26(1) (pp 120-121)
- The importance of validation and refinement in PROM development: using the HASMID questionnaire, a measure of self-management in diabetes. QUALITY OF LIFE RESEARCH, Vol. 26(1) (pp 124-124)
- 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
- Changing HbA(1c) units: a hindarance, not a help to patients. DIABETOLOGIA, Vol. 60 (pp S342-S342)
- Start of EUSCREEN Study that compares cost-effectiveness of childhood vision and hearing screening programmes in all European countries and implements these in Romania and Albania. INVESTIGATIVE OPHTHALMOLOGY & VISUAL SCIENCE, Vol. 58(8) (pp 2361-2361), 7 May 2017 - 11 May 2017. 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
- Developing a PROM to evaluate self-management in diabetes (HASMID): giving patients a voice. HEALTH AND QUALITY OF LIFE OUTCOMES, Vol. 14 View this article in WRRO
- First validation of the short recovering quality of life (ReQoL) measure. QUALITY OF LIFE RESEARCH, Vol. 25 (pp 96-96)
- Constructing the short recovering quality of life (ReQoL) measure for use in a mental health population: combining psychometric and qualitative evidence. QUALITY OF LIFE RESEARCH, Vol. 25 (pp 70-70)
- Valuing the impact of self-management on quality of life in diabetes using discrete choice experiments. QUALITY OF LIFE RESEARCH, Vol. 25 (pp 134-134)
- Developing the recovery of quality of life measure (ReQoL): the views of mental health service users on potential items. QUALITY OF LIFE RESEARCH, Vol. 25 (pp 46-47)
- 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
- Cost-effectiveness of screening programmes for amblyopia. World Ophthalmological Congress 2010. Berlin, Germany, 5 June 2010 - 9 June 2010.
- Impact of amblyopia on quality of life. World Ophthalmological Congress 2010. Berlin, Germany, 5 June 2010 - 9 June 2010.
- Does vision matter: a systematic review of the relationship between visual acuity and utilities.. Royal Collage of Ophthalmologists Annual Congress. Liverpool, UK, 25 May 2010 - 27 May 2010.
- Challenges encountered in developing PROMs: The experience so far in the creation of a PROM for amblyopia in the paediatric population. Part of Symposium: Going to the PROM? Are patient reported outcome measures (PROMs) a useful tool to measure the impact of nursing interventions?. International Nursing Research Conference. Newcastle, UK, 11 May 2010 - 13 May 2010.
- Development of a paediatric disease-specific measure of health related quality of life in amblyopia. British Isles Paediatric Ophthalmology and Strabismus Association (BIPOSA). Glasgow, UK, 23 September 2009 - 25 September 2009.
- Quality of life issues in amblyopia.. Rotterdam Amblyopia Meeting. University Medical Centre, Rotterdam, Netherlands, 12 February 2009.
- Health state valuation for ARMD visual impairment states using simulation lenses. 6th iHEA World Congress on Health Economics. Copenhagen, Denmark, July 2007.
- Are generic preference-based measures truly generic? The case of visual impairment.. 5th iHEA World Congress on Health Economics. Barcelona, Spain, July 2005.
- The relationship between impairment and generic preference based measures, patient valuations and patient life satisfaction in Age Related Macular Degeneration.. European Conference on Health Economics. London School of Economics, London, 2005.
- A survey of quality of life in patients with age related macular degeneration. Transactions of Xth International Orthoptic Congress. Melbourne, Australia, 14 November 2004 - 17 November 2004.
- Lateral gaze incomitance in distance exotropia: should the neutralising prism be placed over the abducting or adducting eye?. British Isles Strabismological Association (BISA). York, UK, 7 October 2004.
- Health status measurement in Age-Related Macular Disease: new evidence for clinic and economic evaluation. Health Technology Assessment International (HTAi). Krakow, Poland, 30 May 2004 - 2 June 2004.
Reports
- Summary Vision Screening Data: Malawi View this article in WRRO
- Summary Vision Screening Data: Poland View this article in WRRO
- Summary Vision Screening Data: Luxembourg View this article in WRRO
- Summary Vision Screening Data: Israel View this article in WRRO
- Summary Vision Screening Data: Hungary View this article in WRRO
- Summary Vision Screening Data: Iceland View this article in WRRO
- Summary Vision Screening Data: Finland View this article in WRRO
- Summary Vision Screening Data: Austria View this article in WRRO
- Summary Vision Screening Data: Sweden View this article in WRRO
- Summary Vision Screening Data: Switzerland View this article in WRRO
- Summary Vision Screening Data: Slovenia View this article in WRRO
- Summary Vision Screening Data: Spain View this article in WRRO
- Summary Vision Screening Data: Serbia View this article in WRRO
- Summary Vision Screening Data: Slovakia View this article in WRRO
- Summary Vision Screening Data: Romania View this article in WRRO
- Summary Vision Screening Data: Scotland View this article in WRRO
- Summary Vision Screening Data: Macedonia View this article in WRRO
- Summary Vision Screening Data: Northern Ireland View this article in WRRO
- Summary Vision Screening Data: Norway View this article in WRRO
- Summary Vision Screening Data: Malta View this article in WRRO
- Summary Vision Screening Data: Moldova View this article in WRRO
- Summary Vision Screening Data: Netherlands View this article in WRRO
- Summary Vision Screening Data: Latvia View this article in WRRO
- Summary Vision Screening Data: Lithuania View this article in WRRO
- Summary Vision Screening Data: Italy View this article in WRRO
- Summary Vision Screening Data: Kosovo View this article in WRRO
- Summary Vision Screening Data: Republic of Ireland View this article in WRRO
- Summary Vision Screening Data: Germany View this article in WRRO
- Summary Vision Screening Data: Greece View this article in WRRO
- Summary Vision Screening Data: France View this article in WRRO
- Summary Vision Screening Data: Estonia View this article in WRRO
- Summary Vision Screening Data: Faroe Islands View this article in WRRO
- Summary Vision Screening Data: Czech Republic View this article in WRRO
- Summary Vision Screening Data: Denmark View this article in WRRO
- Summary Vision Screening Data: Croatia View this article in WRRO
- Summary Vision Screening Data: Cyprus View this article in WRRO
- Summary Vision Screening Data: Bulgaria View this article in WRRO
- Summary Vision Screening Data: Bosnia and Herzegovina View this article in WRRO
- Summary Vision Screening Data: Belgium (Brussels) View this article in WRRO
- Summary Vision Screening Data: Albania View this article in WRRO
- Summary Vision Screening Data: England & Wales View this article in WRRO
- Reviewing the impact of visual acuity on utility values and assessing the appropriateness of the EQ-5D in Diabetic Macular Edema
- Reviewing the impact of visual acuity on utility values and assessing the appropriateness of the EQ-5D in Diabetic Macular Edema. Report to Novartis. April 2010.
- BIOS Screening Audit report 2016-2017
- General population survey to obtain values for AMD visual impairment states using lenses.
- BIOS Screening Audit report 2015-2016 View this article in WRRO
Website content
- Amblyopia and quality of life: a systematic review. Retrieved from http://eprints.whiterose.ac.uk/11040/
- Clinicians’ perspectives of health related quality of life (HRQoL) implications of amblyopia: a qualitative study. Retrieved from http://eprints.whiterose.ac.uk/11196/
- Valuing condition specific health states using simulation contact lenses. Retrieved from http://eprints.whiterose.ac.uk/11028/
Posters
- Health Related Quality of Life Measures (HRQoL) in Orthoptics. British and Irish Orthoptic Society Scientific Conference, Oxford UK.
- Visual impairment states: valuation using simulation lenses. International Society for Quality of Life Research, Toronto, Canada.
- First validation of the Recovering Quality of Life measures: a new PROM for use in mental health.
- Constructing a classification system for a new QALY measure in mental health: recovering quality of life (ReQoL).
Working papers
- Patient reported outcome measures of quality of life in Duchenne muscular dystrophy (DMD): a systematic review of content and structural validity using COSMIN. HEDS Discussion Paper Series. 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