Measuring and improving the quality of NHS care for children and young people

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 in some settings.17 However, there has been limited response to many of the Forum’s recommendations, and many of the indicators that have been introduced are of limited benefit, as they have not been validated for this age group and/or CYP data are aggregated with those of older adults. Building on previous recommendations by the Chief Medical Officer for England1 and the CYP Health Outcomes Forum,15 and as a follow-up to the publication of the Royal College of Paediatrics and Child Health (RCPCH) services standards,18 19 the RCPCH initiated a 2-year project to agree on 5–10 core quality measures for acute general paediatric care. The final 2016 report20 represents an important advance in bringing together key principles for measuring and improving quality in acute general paediatric services (see box 1), but the project was not able to reach agreement on its original goal. One key barrier was the lack of a common language and framework for understanding the purpose of measuring quality, what should be measured and how; we attempt to address these concerns in the sections below and in box 1. Another recurring issue was the lack of knowledge about existing quality measures and data sources. This was addressed by convening a workshop in May 2017 to which each relevant national body was invited to submit their existing measures, as well as related challenges and priorities for future work. A summary of this material is presented in table 1. Lastly, a relative lack of primary research was noted in developing, validating and implementing appropriate quality measures.21