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The challenge of measuring children and young people’s experience of care

The latest NHS Outcomes Framework, published last month, contains a new indicator concerning young people's experience of care. If your team commissions hospital services for children and young people, it is worth paying early attention to the indicator and the opportunities it creates.

An indicator to be derived from a Children's Patient Experience Questionnaire was announced ‘ensuring that people have a positive experience of care'. This is a new departure for the NHS and, though welcome and arguably overdue, measuring and improving children's and young people's experiences of care presents some challenges for commissioners and providers alike. In particular, children and young people have previously been excluded from the regular NHS national survey programmes so most NHS organisations will have little – if any – baseline data about younger patients' experiences of care. Consequently, very few will have a good understanding of care quality from the user perspective or clear commissioning priorities for improvement based directly on children's feedback.

This is, in part, because developing instruments to provide robust and reliable information about the experiences of children and young people has its own obvious challenges. The new Outcomes Framework indicator will be derived from an outpatient survey instrument that Picker Institute Europe developed with Sheffield's Children's NHS Foundation Trust, which was  rolled out for other trusts' use on a ‘voluntary' basis, that is outside of the national patient survey programme in 2010 and 2011. The indicator will measure and benchmark performance using a single composite score derived from responses to key questions about several different aspects of children's and young people's experience.

As with data from adults, individuals and organisations will vary in how they respond to patient experience data from children and young people.  Some will take it very seriously, some less so, and some will question whether children can reliably evaluate their experiences at all. Once and for all, however, the Picker Institute's work demonstrates that asking children and young people directly about their experiences of healthcare provides relevant, reliable and useful information. It also confirms that parent/carer views, though important, are not necessarily valid proxy measures.

Sheffield Children's Hospital has used its survey results to make measurable improvement in its outpatient services. In the first (2009) survey, for example, one area of concern for respondents was communication about waiting times and organisation of the outpatients department. The trust tackled this by introducing a bleep system that allows young patients to leave the waiting area perhaps to visit the hospital cafe, and notifies them when it is time to return for their appointment. In the subsequent survey, the percentage of respondents saying that the outpatient department was not well organised had fallen from 41 per cent to 36 per cent.

As the organisation that initiated and funded the paediatric survey instrument, Sheffield Children's Hospital is ahead of the field; paediatric surveys are embedded and there is good data to work with. For commissioners in most other areas, understanding and improving children's and young people's experiences will mean getting to grips with the new indicator and the new survey instrument, and establishing baselines.  Above all, it will mean creating a commissioning climate that supports providers - by taking younger patients' views seriously and using new information effectively.

Penny Woods is chief executive of the Picker Institute Europe

Five things to remember about measuring the experience of children and young people

  1. Few instruments have been developed to gather feedback directly from children and young people about hospital care
  2. Parent/carer views are not necessarily accurate or reliable proxy measures of children's experiences
  3. Surveys for younger patients must be developed with them and must be thoroughly tested
  4. Survey findings can be used to prioritise quality improvement work
  5. Priority areas identified in a recent paediatric outpatient survey related to waiting, pre-appointment information and communication with children