About Down's Syndrome : Exploring how quality of life is measured for adults who have a learning disability

Can you help with this project?

John O’ Dwyer, who is a researcher at the University of Leeds, would like to develop an easy-read quality of life questionnaire for adults (18 years plus) who have a learning disability.

John wants to do this to help adults who have a learning disability to answer questions about their own health and how they are feeling.

There is information in easy read about this project here.

If you take part, John will contact you twice on Zoom over a period of two weeks.

Each call will take about 30 minutes.

John will ask you questions about your health.

You will not have to answer any questions you don’t want to.

The information you give will be anonymous and confidential.

Participants will receive a £20 Love2Shop voucher for helping with the project.

If you have any questions and/or you would like to take part you can email or call John using:

Tel: 0113 343 6926

Email: j.odwyer@leeds.ac.uk


In the UK, decisions on health care provision are typically subject to being shown to represent value for money (i.e. cost-effective). This is assessed using cost effectiveness analysis, which involves an assessment of the costs and benefits; the latter assessed using a measure of health-related quality of life (HRQoL). The National Institute for Health and Care Excellence (NICE) recommend using the EQ-5D (EuroQol – Five Dimensions), as the measure of HRQoL for cost-effectiveness analyses. The EQ-5D is a simple, ‘one-for-all’ measure of HRQoL, where the user chooses the statements which best describes their health today. It has been designed for self-completion by participants and was designed to be of little difficulty, taking only a few minutes for someone to complete.

For people who have a learning disability however, there can be challenges completing the EQ-5D. A recent NIHR funded study, OK-Diabetes, assessed the EQ-5D with adults who have a mild to moderate learning disability and found that over half of the group had difficulty completing the measure. The main difficulty experienced by the study participants was with the wording/language of the statements, and being able to understand what the statements meant. Rephrasing and explanation of terms made completion easier, however this invalidates the questionnaire.

The aim of the project is to adapt the EQ-5D questionnaire to facilitate completion by adults who have a mild to moderate learning disability, so that the resulting data accurately reflects the quality of life of this group.

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