News and events


Thursday, 07 December 2023

Update on UK valuation of EQ-5D-5L: Data collection complete

Data collection for the new UK EQ-5D-5L valuation study was completed on September 18, 2023. For this study, 1200 subjects were recruited in the UK, who were interviewed by videoconference (using Zoom) or face-to-face. On November 14, 2023 a study Steering Group meeting took place where reports on the complete data set were reviewed extensively. The Steering Group concluded that the data quality is acceptable for modelling the EQ-5D-5L value set for the UK. The study team will now focus on modelling the study data, in order to estimate the UK EQ-5D-5L value set.

Data collection was in accordance with the published study protocol, lead by Donna Rowen. During the study, data collection was paused three times for scheduled interim analyses and Steering Group meetings. These took place at 20%, 40% and 60% of the data collection, as specified in the Study Governance document. At these interim analysis meetings the Steering Group discussed interviewer performance, data quality and representativeness of the participants (according to age, sex, ethnicity, socioeconomic status, and proportional representation across England, Scotland, Wales and Northern Ireland). At all timepoints these were considered to be acceptable, so no changes were made to the study protocol.

The Steering Group met on November 14, 2023 to consider reports on the complete data set from the independent Quality Control Team, the EQ-VT Support team and the study team. The Steering Group reviewed and discussed detailed reports on interviewer compliance with the study protocol, sample characteristics and sample representativeness. Assessments of the preference data, elicited using the time trade-off technique, included the distribution of time trade-off responses, logical inconsistencies where a better health state is valued worse, proportions of the time trade-off responses at certain easy-to-achieve values, participant understanding and engagement, amongst others (please see the study protocol for further details).

The Steering Group unanimously concluded that the complete dataset was of acceptable quality and addressed the concerns raised during the quality assurance of the Devlin et al. (2017) value set for England (see the quality assurance report by Hernandez Alava et al. here and the rebuttal by van Hout et al. here). Therefore, the Steering Group signed off on the final dataset. The study team will now focus on modelling the study data, in order to estimate the UK EQ-5D-5L value set. You can follow the progress of the study on the EuroQol blog.

Monday, 13 November 2023

ISOQOL conference (18-21 October 2023, Calgary, Canada).

Members of the SCHARR Outcomes group, including Phil Powell, Donna Rowen and Jill Carlton, were in attendance at the ISOQOL conference (18-21 October 2023, Calgary, Canada).

Donna Rowen chaired the Health Preference Research Pre-conference symposium on "How health preference research can enhance the development and use of PROs to inform decision-making and clinical practice". As part of the symposium, Phil Powell presented "Enabling PROMs to inform policy using HPR: A case-study in diabetes" showcasing the development of a new preference-weighted measure for people with hypoglycaemia. Donna Rowen also presented "Undertaking studies to inform public policy: How use of public involvement, piloting and continual data monitoring can ensure effective use of online interviewing", discussing her ongoing experience with the UK valuation of EQ-5D-5L.

Phil Powell gave an oral presentation on "Understanding public and expert views around the normative decisions made to value health-related quality of life in children" giving an update on his EEPRU funded work exploring public and expert perspectives on who should be asked to value child health states and who they should be asked to think about when doing so. Phil gave further poster presentations on two SCHARR Outcomes reviews "The impact of Motor Neuron Disease (MND) on health-related quality of life: A systematic review and conceptual framework" and "Measuring quality of life in Lysosomal Storage Disorders (LSDs): A rapid scoping review of available tools and themes" led by Emily McDool.

Jill Carlton presented posters from a series of SCHARR Outcomes projects, including  "The Hypo-RESOLVE QoL: Mixed methods development of a new patient reported outcome measure to quantify the impact of hypoglycaemia on health-related quality of life", detailing the significant multi-study and multi-stakeholder work that was conducted to develop a novel outcome measure for assessing the impact of hypoglycaemia in diabetes as part of the international Hypo-RESOLVE project. Jill also presented EEPRU-funded "Exploring the content validity of the EQ-5D-Y-3L, EQ-5D-5L, and CHU9D instruments a cognitive interview study" and "A systematic review of young children's involvement (<= 7 years) in qualitative research for the development and testing of patient reported outcome measures (PROMs)" led by SCHARR Outcomes PhD Student Victoria Gale.

Monday, 30 October 2023

ISPOR Conference (12-15 November, Copenhagen, Denmark)

Members of the SCHARR Outcomes group will be attending the ISPOR Europe conference in Copenhagen, taking place from 12-15 November.

Dr Jill Carlton will be taking part in a panel session, Measuring Health Related Quality of Life in Paediatric Life Limiting Progressive Diseases. Whose Perspective Are We Measuring?, and an ISPOR forum, Are We Patient-Centered Yet? Patient Engagement and Patient-Centered Research in HEOR (Monday 13 November)

Professor Donna Rowen will be presenting at an ISPOR good practice task force, Recommendations on Valuing HRQoL of Children & Adolescents in Economic Models (Pediatric Utilities) (Monday 13 November)

Professor Ben van Hout and Dr Paul Schneider will be discussing The Role of Patient Preferences in Economic Evaluations: Barriers and Opportunities for a Patient-Based QALY (Monday 13 November)

Posters will also be presented by Professor Donna Rowen and Dr Matthew Franklin.

Wednesday, 18 October 2023

EuroQol Plenary (20 – 21 September 2023, Rome, Italy)

Members of the SCHARR Outcomes group, including Clara Mukuria, Tess Peasgood, Phil Powell, Donna Rowen and Paul Schneider, were in attendance at the EuroQol Plenary meeting (20-21 September 2023, Rome, Italy).

Philip Powell presented a poster describing recent consultative research to help understand public and expert views on normative decisions made when valuing health in children and young people. Specifically, these normative decisions included who to ask to value child health (i.e., adults, adolescents, children) and who they should think about when doing so (i.e., themselves, a younger person). Previous decisions have been made in situ by health economists and allied professionals without consultation of other key stakeholders. The poster presented preliminary findings from two studies. In the first, a series of focus groups were held with informed members of the UK public to elicit their normative views on the issues mentioned above. In the second, a Delphi study is ongoing eliciting normative views amongst experts. Key findings include that normative views of members of the UK public and experts may differ from current practices in UK child health valuation, including the greater involvement of adolescents. The work was designed to help inform UK policymakers on current normative perspectives in child health valuation and was funded by the National Institute for Health and Care Research (NIHR) Policy Research Programme, conducted through the Policy Research Unit in Economic Methods of Evaluation in Health and Social Care Interventions, PR-PRU-1217-20401.

Monday, 16 October 2023

Podcast: The impact of Hypoglycaemia on society

SCHARR outcomes researcher, Dr Jill Carlton, recently starred in the SCHARR Communicable Research Podcast to discuss research undertaken as part of the international Hypo-RESOLVE project to understand the impact and burden for people living with diabetes.

The podcast can be accessed via:


Apple Podcasts

Spotify Podcasts

Google Podcasts

More information on the Hypo-RESOLVE project may be found here:

Wednesday, 27 September 2023

Recent publications

Gale V, Carlton J. Including Young Children in the Development and Testing of Patient Reported Outcome (PRO) Instruments: A Scoping Review of Children's Involvement and Qualitative Methods. Patient. 2023 Jul 4. DOI 10.1007/s40271-023-00637-8 

Devlin, N.J., Pan, T., Sculpher, M. et al. Using Age-Specific Values for Pediatric HRQoL in Cost-Effectiveness Analysis: Is There a Problem to Be Solved? If So, How?. PharmacoEconomics 41, 1165–1174, 2023. DOI 10.1007/s40273-023-01300-8 

Sheen D, Peasgood T, Goranitis I. Eliciting societal preferences for non-health outcomes: a person trade-off study in the context of genomics. Clinical Therapeutics. 2023 Jul 29. DOI 10.1016/j.clinthera.2023.07.004 

Monday, 24 July 2023

Welcome Paul Schneider

The Outcomes group would like to welcome Paul Schneider to the team. Paul recently completed his PhD in SCHARR and has taken on the role of Research Associate in the Outcomes group on a part-time basis. Welcome Paul!

Wednesday, 14 June 2023

Congratulations to Tara Wickramasekera 

Many congratulations to Tara Wickramasekera who was awarded a NIHR Doctoral Fellowship. Tara's PhD will focus on developing and evaluating a patient decision tool to promote informed decision-making for patients who are considering medical or surgical treatments for ulcerative colitis. 

Wednesday, 05 June 2023

Tessa Peasgood appointed as Senior Lecturer

The Outcomes group would like to welcome Tess Peasgood to the team. Tess previously worked in SCHARR Outcomes before taking up a post at the University of Melbourne. Tess was recently appointed as Senior Lecturer. Welcome back Tess! 

Wednesday, 10 May 2023

7th UK Patient Reported Outcome Measures (PROMs) Research Conference

Now in its seventh year, the annual PROMs Research Conference will be an in-person, one-day event on Thursday 22 June 2023. 

'PROMs Across the Lifespan' Thursday 22nd June at the University of Sheffield.  For further details and to book, click here.

Thursday, 04 May 2023

Recent publications

Mukuria C, Peasgood T, McDool E, Norman R, Rowen D & Brazier J. Valuing the EQ Health and Wellbeing Short (EQ-HWB-S) using time trade-off and a discrete choice experiment: A feasibility study.  Value in Health, in press. 2023. DOI:

Carlton J, Powell P, Rowen D, Broadley M, Pouwer F, Speight J, Heller S, Gall MA, Rosilio M, Child CJ, Comins J, McCrimmon RJ, de Galan B & Brazier J; 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 Med. 2023; 40(3):e15007.  DOI: 10.1111/dme.15007.

Peasgood T, Bourke M, Devlin N, Rowen D, Yang Y & Dalziel K. Randomised comparison of online interviews versus face-to-face interviews to value health states. Soc Sci Med. 2023; 323:115818. DOI:10.1016/j.socscimed.2023.115818

Wang H, Rowen D, Brazier J & Jiang L. Discrete Choice Experiments in Health State Valuation: A Systematic Review of Progress and New Trends. Appl Health Econ Health Policy 2023; 21, 405–418. DOI:

Acaster S, Mukuria C, Rowen D, Brazier J, Wainwright C, Quon B, Duckers J, Quittner A, Lou Y, Sosnay P & McGarry L. Development of the CFQ-R-8D: Estimating Utilities From the Cystic Fibrosis Questionnaire-Revised. Value in Health, 2023;26(4):567-578. DOI:10.1016/j.jval.2022.12.002.

Monday, 24 April 2023

UK valuation of EQ-5D-5L – progress update

After successfully completing a pilot phase of interviewer training and data collection at the end of 2022, data collection is now underway for the UK valuation of EQ-5D-5L. The study is led by Professor Donna Rowen and supported by the EuroQol Research Foundation. The first interim analysis, when 20% of data was collected, for in-depth checking of both data quality and modelling results has been successfully completed by an independent Quality Control team. The Steering Group met to discuss the outcome of the first interim analysis and was pleased with the quality of the data. The Steering Group decided that the study could continue as planned. Further details are available here: New UK EQ-5D-5L Valuation Study | BLOG – EQ-5D (

Wednesday, 21 December 2022

ISPOR Europe Conference (6 – 9 November 2022, Vienna, Austria)

Members of the SCHARR Outcomes group were in attendance at the ISPOR (International Society for Pharmacoeconomics and Outcomes Research, Inc) Europe Conference (6 – 9 November 2022, Vienna, Austria).

Dr Clara Mukuria presented a poster on the feasibility of valuing the EQ Health and Wellbeing Short (EQ-HWB-S), a new generic measure that covers aspects of health and wellbeing. The study assessed the use of EuroQol Valuation Technology which uses time trade-off (cTTO) and discrete choice experiment (DCE) to generate utilities.  The study found that EQ-HWB-S can be valued using cTTO and DCE administered using EQ-VT. The results offer an opportunity to test the validity of the EQ-HWB-S utilities. More information can eb found here

Professor Donna Rowen presented a poster examining the impact of mode of administration of time trade-off studies via either in-person interviews or online interviews (e.g. via Zoom) on the accessibility and inclusivity for people participating in these studies. The study was funded by the EuroQol Group and was undertaken to inform the UK valuation of EQ-5D-5L, where the decision has been made to offer a choice of in-person and online interview to participants to enable accessibility and inclusivity of those able to participate, maximising sample representativeness.  

Dr Jill Carlton was a panel member in an issues panel alongside Fleur Chandler and Peter Neumann.  Chaired by Ron Akehurst, the panel discussed "Treating the Family and Not the Individual - How Can We Capture Burden and Quality of Life for Familial Carers of Those with Life Limiting Illness?".  Some diseases significantly affect more than just the patients and may have profound effects on carers and other family members. This is particularly the case for familial carers of people with life limiting illness, though not exclusive to them. There is no consensus on whether HTA should seek to incorporate these carer effects or, if so, how. HTA bodies take different perspectives on measuring carer QoL and burden. There are significant challenges in measuring carer QoL in life limiting progressive conditions and disagreement on whether such measures should be routinely included, particularly for life transforming treatments that can change the course of disease progression.

The panel discussed whether there is any case to include wider carer considerations in HTA and, if they are included, the appropriate ways in which it might be done. This included addressing questions such as

The panellists represented different stakeholder and geographical perspectives. Fleur Chandler presented a carer perspective arguing for more pragmatic and sensitive approaches to measuring QoL in those caring for people with lifelong progressive and life limiting conditions and recommend greater collaboration between patient groups, academics, manufacturers and agencies. Jill Carlton, an academic researching carer HRQoL and burden, argued that current approaches do not always capture what is important to carers. Peter Neumann showed how the approach reflected in the ISPOR "Value Flower" has relevance.

More information can be found here 

Monday, 19 December 2022

Recent publications

A selection of research papers, recently published by members of the ScHARR outcomes team: 

Kik J, Heijnsdijk EAM, Mackey AR, et al. Availability of data for cost-effectiveness comparison of child vision and hearing screening programmes. Journal of Medical Screening. 2022. DOI:

Powell PA, Carlton J. A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Qual Life Res. 2022 . DOI: 

Chatwin H, Broadley M, Hendrieckx C, Carlton J, Heller S, Amiel SA, de Galan B, McCrimmon RJ, Pedersen-Bjergaard U, Pouwer F, Speight J; Hypo-RESOLVE Consortium. The impact of hypoglycaemia on quality of life among adults with type 1 diabetes: Results from "YourSAY: Hypoglycaemia". J Diabetes Complications. 2022;  21:108232. DOI:

Mayland CR, Sunderland KA, Cooper M, Taylor P, Powell PA, Zeigler L, Cox V, Gilman C, Turner N, Flemming K, Fraser LK. Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools. Palliat Med. 2022; 36(8):1186-1206. DOI:

Keetharuth, A.D., Hussain, H., Rowen, D. et al. Assessing the psychometric performance of EQ-5D-5L in dementia: a systematic review. Health Qual Life Outcomes 2022; 20(139). DOI: 

Rowen D, Mukuria C, Bray N, Carlton J, Longworth L, Meads D, O'Neill C, Shah K, Yang Y. Assessing the comparative feasibility, acceptability and equivalence of videoconference interviews and face-to-face interviews using the time trade-off technique. Soc Sci Med. 2022; 309:115227. DOI: 

Rowen D, Mukuria C, McDool E. A Systematic Review of the Methodologies and Modelling Approaches Used to Generate International EQ-5D-5L Value Sets. Pharmacoeconomics. 2022; 40(9):863-882. DOI:

Bansback N, Trenaman L, Mulhern BJ, Norman R, Metcalfe R, Sawatzky R, Brazier JE, Rowen D, Whitehurst DGT. Estimation of a Canadian preference-based scoring algorithm for the Veterans RAND 12-Item Health Survey: a population survey using a discrete-choice experiment. CMAJ Open. 2022; 10(3):E589-E598. DOI:

Peasgood T, Mukuria C, Rowen D, Tsuchiya A, Wailoo A. Should We Consider Including a Value for "Hope" as an Additional Benefit Within Health Technology Assessment? Value Health. 2022; 25(9):1619-1623. DOI:

Powell, P.A., Karimi, M., Rowen, D. et al. Hypothetical versus experienced health state valuation: a qualitative study of adult general public views and preferences. Qual Life Res. 2022. DOI:

Carlton, J, Powell, P, Rowen, D, et al. 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 Med. 2022. DOI:

Broadley M, Chatwin H, Søholm U, Amiel SA, Carlton J, De Galan BE, Hendrieckx C, McCrimmon RJ, Skovlund SE, Pouwer F, Speight J; Hypo-RESOLVE Consortium. The 12-Item Hypoglycemia Impact Profile (HIP12): psychometric validation of a brief measure of the impact of hypoglycemia on quality of life among adults with type 1 or type 2 diabetes. BMJ Open Diabetes Res Care. 2022; 10(4):e002890.DOI: 

Tuesday, 13 December 2022

Recent publication: An exploratory analysis of the effects of self-reporting serious health problems on health state valuation

It is established that those with health problems value health states differently from those who do not - but is this because they have more information or is it because they have different preferences from the general public?  We postulate that if it is due to more information, then the difference should be contained in the dimensions of health where they have problems, while if it is due to different preferences, then the difference will not be contained in those dimensions.  Analysis of secondary data that valued EQ-5D-5L states using DCE with duration found the latter effects.  This finding has normative implications because it would makes it harder to justify the use of experienced preferences in value sets.

Click here to read the full article

Wednesday, 23 November 2022

Presentation of ScHARR Outcomes work at ISOQOL

Members of the SCHARR Outcomes group were in attendance at the 29th Annual ISOQOL (International Society for Quality of Life Research) Conference "Redefining boundaries – breaking new ground in patient-centered outcomes research" (19 – 22 October 2022, Prague, Czech Republic).  Prof Donna Rowen presented preliminary results on the development of a preference-based measure for age-related macular degeneration (AMD) from the Vision Impairment in Low Luminance (VILL) patient reported outcome measure (PROM).  The work was part of the MACUSTAR study (, which is a unique project supported by the Innovative Medicines Initiative (IMI) with a financial contribution of 8.025 million Euros, which will be complemented by an in-kind and in-cash contribution provided by EFPIA partners and ZEISS Meditec AG.  MACUSTAR is an observational clinical study with 20 participating clinical study sites all over Europe.  One part of the study concentrates on the different stages of AMD (early, intermediate, late and no AMD). The second part of the study examines the progression from intermediate AMD to late stage AMD against the functional, morphological and patient-reported alterations. The study data is analyzed to develop and validate appropriate clinical endpoints for future clinical trials and drug development in iAMD.  The development of a new preference-based measure fills a gap in AMD where generic preference-based measures typically lack sensitivity.

Dr Phil Powell gave an oral presentation on the results of a scoping review aimed to identify tools designed to assess the quality of dying, death and end-of-life care for children and young people, as well as describing evidence on the validity and reliability of these tools.  This work was part of a White Rose Collaboration between the University Sheffield, University of York, and University of Leeds on measuring, valuing and improving the quality of care for dying people and their families, led by Dr Catriona Mayland. Phil also presented a poster of a study protocol which aims to consult the public and experts in health valuation as to whose values should we ask (and how) when valuing health-related quality of life in children and adolescents.  This NIHR-funded project is currently ongoing with results expected in 2023.

Dr Jill Carlton gave an oral presentation describing the results of a face and content validation study conducted as part of the Hypo-RESOLVE project (  As well as outlining the methods and results of this important component of the development of a new PROM designed to measure the impact of hypoglycaemia on quality of life (Hypo-RESOLVE QoL), she discussed some of the methodological issues around evidencing face validity whilst following best practice guidelines.  Jill also presented a poster of the study protocol of the development of the Hypo-RESOLVE QoL and was recognised as Outstanding Poster Award Finalist.  See the ISOQOL newsletter piece here 

Tuesday, 04 October 2022

Recent publications

A selection of research papers, recently published by members of the ScHARR outcomes team: 

Carlton J, Powell PA & Project HERCULES Carer Group. 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. 2022;20(57). DOI:

Rogers HJ, Sagabiel J, Marshman Z, Rodd HD & Rowen D. Adolescent valuation of CARIES-QC-U: a child-centred preference-based measure of dental caries. Health and Quality of Life Outcomes. 2022; 20(1). DOI:

Rowen D, Powell PA, Hole AR, Aragon M-J, Castelli A & Jacobs R. Valuing quality in mental healthcare: A discrete choice experiment eliciting preferences from mental healthcare service users, mental healthcare professionals and the general population. Social Science and Medicine. 2022;301. DOI:

Rowen D, Mukuria C, Powell P & Wailoo A. Exploring the issues of valuing child and adolescent health states using a mixed sample of adolescents and adults. PharmacoEconomics. 2022; 40:479-488. DOI:

Rowen D, Wickramasekera N, Hole A, Keetharuth D & Wailoo A. A DCE to elicit general population preferences around the factors influencing the choice to make clinical negligence claims. Value in Health. 2022. DOI:

Monday, 22 September 2022

Data collection for the UK EQ-5D-5L valuation study to start in October 2022

Data collection for this key study to generate a UK value set for the EQ-5D-5L is due to start in October and will involve 1,200 interviews conducted in a representative sample of people living in England, Scotland, Northern Ireland and Wales. The study team is led by Professor Donna Rowen from ScHARR at the University of Sheffield and comprises six institutions. For a listing of the full study team and more details about the study and its governance please go to the UK EQ-5D-5L valuation study Blog on the EuroQol website. 

To inform the project, we have undertaken research assessing two modes of administration of the EQ-VT TTO interviews were compared: interview by videoconference vs the regular face-to-face interview. The results demonstrate that video interviews are feasible and acceptable, with both interviewing modes generating good-quality data. To make the study inclusive and maximise sample representativeness, both modes will be used in the UK valuation study, with respondents able to choose the one they prefer. 

A systematic review of published papers generating international EQ-5D-5L value sets was undertaken in inform the study protocol and statistical analysis plan. 

Monday, 15 August 2022

A new framework to identify quality of mental healthcare

Members of the SCHARR Outcomes team, Philip Powell and Donna Rowen have developed a new six-point framework for understanding quality in mental healthcare from the viewpoint of service users and mental health professionals. They interviewed both groups to understand their views on how quality should be assessed in mental healthcare. They found a high degree of concordance between views of each, for example both groups were sceptical of top-down aggregate targets. They also found that service users are prepared to travel further to receive care where they feel they are treated more like a ‘person’ and less like a ‘diagnosis’. The study was part of the Health Foundation’s Efficiency Research Programme and the new framework can be used to help inform the selection of a meaningful set of quality indicators in mental health for research and practice.

You can read the full article here:

What Matters for Evaluating the Quality of Mental Healthcare? Identifying Important Aspects in Qualitative Focus Groups with Service Users and Frontline Mental Health Professionals.

Thursday, 28 July 2022

Development of a new measure of health and wellbeing (EQ-HWB)

Members of the SCHARR Outcomes team have led the international development of a new broader generic measure of health and wellbeing, the EQ Health and Wellbeing (EQ-HWBTM) which has been designed to be used in economic evaluations across health, social care and public health.

In addition to estimating quality-adjusted life years, the new EQ-HWB aims to measure factors such as autonomy and relationships that are important to patients and care users. In going beyond the commonly used measures of health-related quality of life (HRQOL), the EQ-HWB offers several important advances. Assessing broader aspects of quality of life (QOL) for the recipients will enable their care needs to be better understood in terms of social care (e.g., improved relationships, greater independence, and control). Furthermore, unlike existing tools, it aims to consider the impact of carers’ quality of life.

The EQ-HWB was developed using qualitative evidence from health and care service users and carers, along with psychometric evidence, collected in six countries (Argentina, Australia, China, Germany, United Kingdom, United States). The EQ-HWB is designed for evaluating interventions in healthcare, public health, and social care to inform decision making both within and between these sectors.

The extensive and important body of work,  showcased in the April themed issue of Value in Health “Expanding the Scope of Value for Economic Evaluation”, examines the development of the new generic measure across six articles, four of which are led by current and former members of the ScHARR Outcomes team, including John Brazier, Tessa Peasgood, Clara Mukuria and Jill Carlton.

You can read the articles here:

The EQ-HWB: Overview of the Development of a Measure of Health and Wellbeing and Key Results

Qualitative Review on Domains of Quality of Life Important for Patients, Social Care Users, and Informal Carers to Inform the Development of the EQ-HWB

Generation, Selection, and Face Validation of Items for a New Generic Measure of Quality of Life: The EQ-HWB

Developing a New Generic Health and Wellbeing Measure: Psychometric Survey Results for the EQ-HWB

For further information and to find out about using the instrument, please also see the EQ-HWBTM  page on the EuroQol website 

Thursday, 07 July 2022


SCHARR researchers are developing a new patient reported outcome measure (PROM) to measure the impact hypoglycaemia has upon quality of life (QoL) for people living with diabetes. The work forms part of the international Hypo-RESOLVE project ( Hypo-RESOLVE brings together 23 partners from 9 European countries and the US, and comprises leading academic experts, pharmaceutical and device manufacturers, as well as patient organisations. 

Previous work by the ScHARR Outcomes group has suggested that existing questionnaires do not have a robust evidence base to be fit-for-purpose in this area, and there is need for a new PROM to better capture the impacts of hypoglycaemia on people who experience it.     

Earlier stages of this project have involved talking to people who experience hypoglycaemia (or hypos) and finding out all the ways in which having a hypo affects their lives. For some, this included managing blood glucose and the potential for hypos, which had an impact on their QoL, even in the absence of a hypo episode. We found that hypos can affect people’s physical functioning (such as the ability to take part in activities, like work or sports), psychological functioning (for example, feelings of anger and frustration), and also social functioning (like relationships with friends and family). The findings were used to inform a long list of draft questions that were then tested out during further ‘cognitive’ interviews. Cognitive interviews allow us to check whether the draft questions were relevant, understandable and comprehensive. Based upon the feedback we received, we were able to refine the draft questions and other important components of questionnaire design (such as the recall period and type of response options).

The next phase of the project is to test out the draft questions in an online survey.  We are currently recruiting people who experience hypos and asking them to fill in the draft questionnaire, alongside other existing, validated questionnaires that have been used to measure QoL in people living with diabetes. 

If you want to find out more about the project, click here to listen to a podcast recorded by the researchers about their work developing the PROM on the Hypo-RESOLVE project.

Monday, 23 May 2022

HESG 2022 

SCHARR Outcomes researchers will be presenting at the Health Economists’ Study Group Summer 2022 Meeting which will take place from 22nd-24th June 2022 at the University of Sheffield. 

Clara Mukuria will present Measuring and valuing health and quality of life using the EQ Health and Wellbeing Short: perspectives from members of the NICE Public Involvement Programme Expert Panel and the paper Using discrete choice experiments to compare personal and social preferences for health and wellbeing outcomes by Tara Wickramasekera, Becky Field, An Ta and Aki Tsuchiya will also be presented.

More information about the HESG and the full conference programme can be found here

Monday, 21 March 2022


New preference-based measure for quality of life in Duchenne muscular dystrophy

A new SCHARR Outcomes developed preference-based measure for measuring quality of life in Duchenne muscular dystrophy is available for use! The 14-item DMD-QoL and 8-item DMD-QoL-8D assesses aspects of physical, psychological, and social quality of life in boys and men with Duchenne. The measure is designed for use as a proxy measure from 7 years and upwards, and a self-report measure for 10 years and upwards.

The DMD-QoL was developed as part of award-winning Project HERCULES, recipient of a EURODIS Black Pearl award for patient engagement, and led by charity Duchenne UK. The measure has been translated into over 27 languages and is available to use via Oxford University Innovation Health Outcomes.

Open access papers describing the development of the DMD-QoL and the DMD-QoL-8D are available to read in Neurology and Value in Health, respectively. The project was informed by an earlier review by the ScHARR Outcomes team into quality of life tools in Duchenne, which found the evidence for existing tools lacking. This review is available to read, open access, in Health and Quality of Life Outcomes. Qualitative work supporting the development of the new measure is under review and should be available soon.

Monday, 21 March 2022

Hypo-RESOLVE podcast link 

New Podcast Series: Patient Engagement in Research Initiatives – The Hypo-RESOLVE Approach

SCHARR Outcomes researchers have starred in a new podcast series as part of the pan-European project Hypo-RESOLVE; a project designed to reduce the burden and consequences of hypoglycaemia in people living with diabetes. This eight-episode series shines a light on the value of patient engagement in general and the innovative way the Hypo-RESOLVE project approaches patient engagement. Scientists, clinicians and members of the Patient Advisory Committee (PAC) discuss the progress in the different work areas of the project and give valuable insight into the experiences of including people with diabetes in research initiatives from both perspectives.

ScHARR Outcomes researchers, Dr Jill Carlton and Dr Phil Powell star in Episode 7 on the development of patient-reported outcome measures (PROs) in hypoglycaemia. They talk with Ken Tait and Renza Scibilia from the Hypo-RESOLVE Patient Advisory Committee (PAC) about PwD involvement in the development of PROs. You can listen to the episode here.

You can also subscribe to the show via Spotify or Apple Podcasts, so you will never miss an episode. Thanks for listening! 

Wednesday, 27 May 2020

International experts launch a foundational set of standards to measure and improve psychotic disorders care globally

Recovering Quality of Life Measure (ReQoL-20) chosen by an international panel of experts for the new set of standards to measure and improve psychotic disorders globally. 

Read the full article.


Past events

HESG 2022

The Health Economists’ Study Group Summer 2022 Meeting will be hosted by the University of Sheffield, from 22nd-24th June 2022. 

Find out more about the event. 

Fifth National Patient Reported Outcome Measure (PROMs) Annual UK Research Virtual Conference

Wednesday 16 and Thursday 17 June 2021 at The University of Sheffield

Find out more about the event.