News and events


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.