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What outcomes of NHS care should be measured for children with neurodisability?

21 February 2012

 New research has been funded by the NIHR HS&DR programme to identify appropriate health outcome measures for children with neurodisability, which would help to determine whether NHS care is effective for these children.

Around one in 20 children in the UK are disabled. The most common childhood disabilities include neurological conditions such as cerebral palsy and autism.  These conditions are often grouped together and called neurodisabilities. Children with these conditions are frequent and intensive users of the NHS.

A recent major review of health and social care for children and young people stressed the need for a shared vision between families and professionals and the importance of taking account of the views of children and young people in planning services. Patient-reported outcome measures (PROMS) are questionnaires that seek the views of patients on their health and health care and there is already a range of questionnaires used with childrenand young people. This study will shed light on how useful these are in neurodisability.

The research team, being led by Dr Christopher Morris of Peninsula Medical School, University of Exeter, will identify which PROMs are the most appropriate to assess care for children with neurodisability.

Dr Morris commented; “It is important that children report on their own health wherever possible and that their views on the care they receive are heard. Getting this right will benefit both the NHS and disabled young people and their families, influencing the provision of health and social interventions.”

The project will:

  • Ask children and parents whether the current questionnaires measure the right things, such as aspects of health that young people and their families think are important.
  • Assess whether the current questionnaires are “good” in scientific terms, for example, do they measure what they say they do, and do they measure health reliably?
  • See whether health professionals agree with the outcomes young people and parents consider are important to measure.

To understand the perspectives of children and young people with neurodisability, their parents, and professionals the researchers will use a research design comprising a systematic appraisal of the questionnaires themselves, focus groups and interviews, and an online survey.

This project was commissioned by the NIHR Health Services Research (NIHR HSR) programme under the management of the National Institute for Health Research Evaluations, Trials and Studies Coordinating Centre (NETSCC) based at the University of Southampton.

View project details.

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The NIHR Health Services and Delivery Research (HS&DR) Programme is managed by the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC). NETSCC is part of the University of Southampton funded by the NIHR, with specific contributions from the CSO in Scotland and NISCHR in Wales and the HSC R&D Division, Public Health Agency in Northern Ireland.

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