12When should young people with chronic rheumatic disease move from paediatric to adult-centred care?
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:
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chronological age;
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maturity;
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medical status;
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adherence;
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independence;
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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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Transforming Duchenne Care: Meeting 25-26 June 2012, Ft. Lauderdale, Florida, USA
2013, Neuromuscular DisordersNeeds of children with a chronic bladder in preparation for transfer to adult care
2013, Journal of Pediatric UrologyCitation Excerpt :Even so, transition is not widely implemented in the Netherlands. We think there is a real need for a structured and coordinated urological transition in the form of a protocol to prevent feelings of being poorly prepared, and feeling “dumped,” and “abandoned” by ex-caregivers, as research with rheumatology patients who switched to adult care showed [6,7]. Coordination between pediatric and adult care appears insufficient, which worsens continuity [7,8].
Liminality and transfer to adult services: A qualitative investigation involving young people with cystic fibrosis
2013, International Journal of Nursing StudiesCitation Excerpt :Becoming an adult sees children facing a number of changes as they progress from school to the workplace and become independent from parents. Young people with a chronic illness also undergo the movement of their care from paediatric to adult services (Robertson, 2006). They should be supported and prepared for this event as they take responsibility for managing their condition (Kennedy et al., 2007) and experience a shift from family to individual-orientated consultations (Sawyer, 2008).
Transition from paediatric to adult care: A challenge
2013, Revue de Medecine InterneTransitional care programs for patients with rheumatic diseases: Review of the literature
2012, Reumatologia Clinica