POMME: Paediatric Outcome Measure ME
Measuring Health in Children With CFS/ME: Testing a New Questionnaire
A collaboration between the Royal United Hospital Bath (RUH), University College London Hospital (UCLH), University of Bristol and the University of Warwick.
This study aims to test a new questionnaire we have developed for young people (aged 8-18) with Chronic Fatigue Syndrome/Myaglic Encephalomyelitis (CFS/ME).
Why are we doing this study?
A good questionnaire can help health professionals and researchers know more about how an illness such as CFS/ME affects a patient, the symptoms, how they feel, what they can do and if they are getting better from treatment.
The questionnaires that are used with young people with CFS/ME at the moment are not designed specifically for them, are too long and miss important questions. This study will test a new questionnaire we have designed in collaboration with young people with CFS/ME.
What will the study involve?
· We would like young people with CFS/ME to complete a new questionnaire.
· We would like to do interviews with some young people to get feedback on the new questionnaire.
The study has two stages:
Stage 1: We will ask 313 young people with CFS/ME to complete the new questionnaire (POMME) to work out which questions we can remove to make it shorter.
Stage 2: We will then check the short-form questionnaire (POMME-SF) works by testing it in a second group of 313 children with CFS/ME at three separate times (when they first come to clinic, then after 2 weeks and after 6 months). We will then check that the new questionnaire can measure change or improvement from treatment.