Background

Children and young people (CYP) in the UK suffer worse health and well-being outcomes than their peers in comparable countries across a range of physical and mental health measures, including overall mortality and deaths from long-term conditions such as epilepsy, asthma and diabetes.1–6 While social determinants, in particular relatively high rates of child poverty, account for some of this mortality gap, there is growing evidence that many deaths could be prevented through more accessible and higher quality National Health Service (NHS) care.2 3

In addition, evidence suggests that the NHS care typically results in worse patient experience for young people aged 16–24 than older adults,7 and that there is sometimes objectively lower quality care for CYP than for adults. The UK ranked fourth out of 30 countries in a recent comparison of the quality of adult diabetes care, whereas the quality and outcomes of diabetes for patients aged 0–24 years lag well behind that of comparable countries.8 9 In addition to moral, public health and economic arguments for improving care quality for CYP, the UK also has legal obligations under the United Nations Convention on the Rights of the Child to provide the best healthcare possible (article 24) and to involve CYP in decisions that affect them (article 12).10–12

Validated and appropriate quality measures are necessary (but not sufficient) to improve care quality and health and well-being outcomes.13 CYP have historically been under-represented in many quality frameworks; for example, one 2015 study reported that 0/77 indicators in the Quality Outcomes Framework for primary care were applicable to CYP.14 Following the recommendations of the CYP Health Outcomes Forum,15 the number of indicators in the NHS Outcomes Framework has increased,16 and the perspectives of CYP using NHS services have been given greater weight …