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When should young people with chronic rheumatic disease move from paediatric to adult-centred care?

https://doi.org/10.1016/j.berh.2005.11.005Get rights and content

Many young people with childhood-onset diseases, including rheumatic diseases, continue to require medical care into adult life. There are many differences between paediatric and adult health care which can make this change a dramatic and difficult one for young people and their families. Transitional care services aim to equip young people with the appropriate knowledge and skills to cope with this change. This chapter will describe the differences between transition and transfer, and the different perspectives of those involved in the transition process, and will discuss the determinants of a successful transfer. Transition models currently used in practice will also be described, as will the evolving evidence base that is contributing to the further development of transitional care services.

Section snippets

Transition versus transfer

Transfer is described as an event that happens on one occasion when information or people move from one place to another. In the context of moving from paediatric to adult care, the moment of transfer can be considered to have happened when the paediatrician discharges a young person from their care and sends a referral to an adult physician or when the adult health-care team sees a patient for the first time. It is very important that clinical responsibilities at this time are clearly defined

Perspectives of transition

Qualitative research to date has given some useful information about the perspectives and attitudes of young people towards transition and transfer to adult services. A UK study of transition processes for physically disabled young people in three school districts found that young disabled people experienced a poor handover to adult services if they had no ‘statement of special educational need’ or if they went to further education college. Young people with cerebral palsy or complex multiple

Determinants of successful transition and transfer

Successful transition and transfer may well have different meanings for young people, parents and health professionals. The optimal method to deliver transitional care services is also not yet known.17, 18 Choosing the right time to transfer a young person to adult services is likely to be the key to success, and this is potentially influenced by many factors. The main determinants of the timing of transition are:

  • chronological age;

  • maturity;

  • medical status;

  • adherence;

  • independence;

  • transitional

Transition models

Few detailed evaluations of different models for transitional care services have been published to date, although several authors have proposed a range of models.17, 28 Sawyer et al described three possible approaches:1 a primary-care-based coordination of the move from child to adult care;2 a generic adolescent service for all specialities coordinated by health professionals with expertise in adolescent health; and3 disease- or specialty-based transitional services where the specialist

Evidence to support the development of transitional services

A national UK audit of adolescent rheumatology services in 2000 highlighted the lack of service provision; 18% of units seeing children had a dedicated adolescent clinic, but generic adolescent health issues were addressed by only two of these clinics. A demand for patient information resources (e.g. disease and drug information, careers) specifically aimed at adolescents with rheumatic diseases was identified. Obstacles to current service provision included funding, time constraints,

Summary

It is evident now that simply transferring the majority of young people with chronic diseases from paediatric to adult care is inadequate to meet their needs at this time. The timing of the move to adult care is determined by many factors, and the importance of each will differ between individual young people. Preparation for the change and careful assessment of the right time to transfer is required. Transitional care services have been developed to meet this need but are not yet universally

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