News and events
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.
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.