Transitioning from paediatric to adult service

Transition is the planned move of a patients care from a paediatric to an adult health care provider. Transition is a step necessary to achieve the best outcomes possible for patients and their families in areas of health, independence and adulthood. Transition can be defined as ‘a purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centred to adult-orientated healthcare systems’ (Blum et al, 1993, cited by DH/Child Health and Maternity Services, 2006)

Preparing for this transition is essential as paediatric services which are generally family centred and developmentally focused differ significantly from adult medical services which attempt to acknowledge patient autonomy.

Transferring care to adult physicians should be ‘a guided educational and therapeutic process, rather than an administrative event’. It should also recognise that transition in health care is only one element of the wider transition from dependent child to independent adult and that in moving from ‘child centred to adult health services, young people undergo a change that is systemic and cultural, as well as clinical’. Encouraging young people to develop as much independence as possible, both from their families and health care staff will help bridge the gap to adult service.

Transition should be a planned phased process, ideally one that is delivered in phases, these phases should be introduced in early adolescence, with the young person becoming aware of their own health and care needs, and the full implications of their medical condition. Progression through phases should be based on the assessment of the young persons’ understanding and their confidence in their own autonomy. Six key areas should be addressed in all phases of transition and these are;

  • Self advocacy
  • Independent health care behaviour
  • Sexual health
  • Psycho social support
  • Educational and vocational planning
  • Health and lifestyle

By the final phase, the young person should have a considerable degree of autonomy over their care. They should be aware of their own health care needs and how best to access support or seek advice and further information/education if needed.

For transition to be successful there are a number of key elements which needs to be considered;

  • Effective communications between hospitals for transfer of medical records and imaging results. Within the NCPE, it is anticipated that the EPR will address this issue, allowing for a more seamless transfer of care.
  • Flexibility with respect to timing of transition. Not all young people will be ready to make the transfer to adult services at the same time. Issues such as cognitive and physical development, emotional maturity and the status of their health should be taken into account when planning transition. This is particularly relevant for children/young adults with comorbid difficulties which could include learning difficulties.
  • Appropriate educational interventions are necessary to assist the adolescent understand the disease, treatment rationale, recognising triggers, taking appropriate action and learning how to seek help from health professionals and navigate the health system. Within the NCPE, it is hoped that the role of the ANP, both from paediatric and adult services, will assist the patient through this process. Having the ANP as key contact person will also be beneficial as they key person will be ‘gate-keeper’ for other ancillary services and will assist the patient in terms of how to access same.
  • Concerns about equivalency of service are highlighted as potential challenges for successful transition. The NECP would anticipate that transferring from one predominantly nurse led service to another equivalent nurse led service should ensure that expectations with regard to quality and intensity are met.

The NCPE have developed a SOP and checklist to guide transition from paediatric to adult services. It is anticipated that agreement on same will lead to coordinated transfer process which will include paediatric service, adult epilepsy service, transition nurse and primary care physician.

The NCPE recommends that each site serving paediatric patients with Epilepsy refer to the SOP and checklist, even when paediatric and adult services are in the same hospital as evidence would suggest that geographic colocation does not always translate into smooth transition services.