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.

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