This research sought agreement on what children and young people with neurodisability want from their health care, and what clinicians are aiming to achieve. This report captures the findings of the Children's Outcomes Measurement Study (CHUMS) which was led by academic researchers from the Peninsula Cerebra Research Unit for Childhood Disability Research at the University of Exeter supported by researchers from Oxford University and York University. CDC led the qualitative research strange of the project consulting with children, young people and their families on what outcomes were most important to them.
In the report it sets out the key health outcomes that were agreed which were; communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. Parents of children with learning disability also rated behaviour, toileting and safety as important. NHS performance is increasingly being judged using questionnaires called patient-reported outcome measures, or PROMs. Therefore, the reseearch team assessed whether or not the key outcomes identified could be measured reliably using existing PROM questionnaires. No PROM was found to be entirely satisfactory in scientific terms but some showed potential.