More young people than ever with chronic health conditions are living into adulthood, but are experiencing a poor transition to adult services. A poorly planned experience may result in young people disengaging from their healthcare, leading to deteriorating health and poor outcomes.

Picker explored the views of young adults with chronic physical health conditions as they transfer from paediatric to adult services, and developed a Patient Reported Experience Measure (PREM) to assess these experiences.

Methods – how we did it

Focus groups were conducted with young adults who had recently transferred from paediatric to adult services. These identified which aspects of healthcare delivery were important to young patients during transition, and informed the development of two PREMS:

  • A tool to assess experiences before/during transition – for those who are approaching transfer to adult services;
  • A PREM for those who have recently transferred to adult services.

The questionnaires were cognitively tested to check for comprehension, with various amendments being made to improve the survey tools. At all stages, a steering group of professionals were consulted which included patient experience leads, clinicians and researchers.

Results – what we found

The aspects of the transition that are important to young patients and were included in the PREM are as follows:

  • Support, involvement and planning the transfer: information, timing, meeting the new team and visiting the new clinic, preparedness
  • Age appropriate care
  • Parental involvement
  • Staff: confidence and trust, knowledge of condition/medical history
  • Self-management of condition, involvement in decisions

It is essential that paediatric and adult services work together to ensure that children and young people have a positive experience of transition, remain engaged with their healthcare and have better health outcomes. Their experiences can be measured using the new transition questionnaire to identify where there is room for improvement. It can also be used to assess the efficacy of planned transition programmes, and to benchmark performance across services and organisations, to drive improvements in transitioning young people to adult services.

Next steps

A full pilot of the PREM is currently underway using a postal methodology, after which it will be made more widely available for care providers to use locally to measure experience and drive improvement.

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