News and events
Monday, 13 November 2023
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)
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
Wednesday, 27 September 2023
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
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:https://doi.org/10.1016/j.jval.2023.02.008
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 (euroqol.org)
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
Can standard methodologies preferred by HTA bodies for assessing effects on patients adequately capture the burden on carers?
Can we reflect what is most important to carers?
Can we account for the inevitable adjustments made by carers over a lifetime?
Should we seek to incorporate anticipatory grief, the value of hope for untreatable life limiting conditions and the long term impact of bereavement?
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
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:https://doi.org/10.1177/09691413221126677
Powell PA, Carlton J. A comprehensive qualitative framework for health-related quality of life in Duchenne muscular dystrophy. Qual Life Res. 2022 . DOI: https://doi.org/10.1007/s11136-022-03240-w
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:https://doi.org/10.1016/j.jdiacomp.2022.108232
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: https://doi.org/10.1177/02692163221105599
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:https://doi.org/10.1186/s12955-022-02036-3
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:https://doi.org/10.1016/j.socscimed.2022.115227
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:https://doi.org/10.1007/s40273-022-01159-1
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: https://doi.org/10.9778/cmajo.20210113
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: https://doi.org/10.1016/j.jval.2022.03.006
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:https://doi.org/10.1007/s11136-022-03304-x
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: https://doi.org/10.1111/dme.15007
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:http://dx.doi.org/10.1136/bmjdrc-2022-002890
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.
Presentation of ScHARR Outcomes work at ISOQOL
Data collection for the UK EQ-5D-5L valuation study to start in October 2022
Monday, 15 August 2022
A new framework to identify quality of mental healthcare
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:
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 (https://www.hypo-resolve.eu/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.
Monday, 23 May 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.
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.
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.
The Health Economists’ Study Group Summer 2022 Meeting will be hosted by the University of Sheffield, from 22nd-24th June 2022.
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.