Informing the NHS Outcomes Framework: what outcomes of NHS care should be measured for children with neurodisability?
Description: The proposed research addresses both the needs of the NHS and its users. The government is changing the ways health services are commissioned. A recent major review of health and social care for children and young people by Sir Ian Kennedy stressed the importance of a shared vision between families and professionals for the health care of children. Therefore there is a commitment to make health and social care for children, in particular, more efficient. 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 the reports of patients using special questionnaires called patient-reported outcome measures, or PROMS.
Children are included in this new strategy. Around 1 in 20 children in the UK are disabled. The most common childhood disabilities include cerebral palsy and autism, which are neurological conditions. These conditions are often grouped together and called neurodisabilities. These children are amongst the most frequent users of NHS services and depend on the NHS to improve their health and wellbeing. As such they and their families form a large and important user group. This research will identify which PROMs would be the most appropriate to assess the effectiveness of NHS care for children with neurodisability. There are lots of PROMs that could be used with children. At the moment, there is no research that has looked specifically at how well these questionnaires work for young people with neurodisability.
The proposed research will investigate this issue by addressing the question - what outcomes of NHS care should be measured for children with neurodisability? To answer the question we have identified three main objectives:
1. To aks children and parents whether the current questionnaires measure the right things, that is, aspects of health that young people and their families think are important?
2. To assess whether the current questionnaires “good” in scientific terms, for example, do they measure what they say they do, and do they measure health reliably?
3. To see whether health professionals agree with what outcomes young people and parents think is important to measure.
To achieve the objectives we will use a range of structured approaches such as focus groups and interviews to understand the perspectives of children with neurodisability, parents and professionals. The research is planned in stages so that by the end a shared a shared vision can emerge of the specific health outcomes that should be used for this group of disabled children.
It is important that children report on their own health wherever possible. This research will also investigate ways to help disabled children and young people to report their own opinions; particularly exploring the use of technology. Hence the proposed research directly addresses the needs of the NHS within the new Outcomes Framework and key recommendations from the Kennedy review. Getting this right will benefit both the NHS and disabled young people and their families by improving the evaluation of integrated NHS care and potentially influencing the provision of health and social interventions.
Amount: £247,400
Funding type: research
Funder scheme: Health and Social Care Delivery Research
Start date: 2012-02-01
End date: 2013-05-31
Investigator: Christopher Morris
Institution: University of Exeter
Funded outputs count: 9
Funder award ID: 10/2002/16
OpenAlex ID: G4257966239