Informing the NHS outcomes framework: what outcomes of NHS care should be measured for children with neurodisability?

This work is being led by members of the Peninisula Cerebra Research Unit for Childhood Disability Research (PenCRU) and in partnership with the Evidence Synthesis Team.

Background

The UK Government is changing the way health services are commissioned. A new NHS Outcomes Framework will be one way of assessing whether the NHS is working effectively and efficiently for patients. The ‘success’ of NHS care will be judged partly from patients reporting their health using special questionnaires called patient-reported outcome measures, or PROMS. The aim of this research is to provide evidence to inform decisions about which PROMs might be used to measure the health of children and young people with neurodisability to assess health outcomes of NHS care. Health is multidimensional, and defined in this study by the World Health Organization’s International Classification of Functioning Disability and Health (ICF).

Around 1 in 20 children in the UK are disabled. Amongst the most common childhood disabilities are cerebral palsy and autism, which are neurological conditions. These conditions are often grouped together under the umbrella of ‘neurodisability’. Children affected by neurodisability are amongst the most frequent users of the NHS, and depend on the NHS to improve their health and wellbeing. A recent review of health and social care for children and young people recommended developing a shared vision between families and professionals for what health care is trying to achieve for children.

This research will identify which generic PROMs might be the most appropriate to assess the health of children with neurodisability as a potential patient-based indicator of NHS care. The systematic review is one of three streams of related research; with the other two research streams comprising qualitative research with children and parents, and a Delphi survey with clinicians.

Project objectives

1. To identify generic (i.e. not condition-specific) patient reported outcome measures (PROMs) used to measure the multidimensional health of children and young people under 18 years old.

2. To identify evidence of the psychometric properties and general performance of the generic PROMs when administered to measure the health of children and young people with neurodisability.

3. To critically appraise and compare the evidence identified in order to make recommendations about which generic PROMs may provide robust instruments for measuring NHS health outcomes.

Further information

Further details about the NIHR Health Services & Delivery Research funded project can be found on the NIHR website. Please also view the protocol and read project paper.