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For young people with chronic disease the process of transfer from paediatric to adult care may be stressful, and prolonged and careful preparation may be needed. Paediatric rheumatologists in Birmingham (KM Bailey and colleagues.
) refer to the event of transfer and the process of transition. During transition many factors need to be considered that affect the medical, psychosocial, and educational and career needs of the young person. In too many cases transfer is a sudden event with little or no apparent prior consideration.
The Birmingham team take as an example the case of a young man with juvenile idiopathic arthritis (JIA) who was recently transferred to adult care at the age of 19 years. He had developed systemic JIA at the age of 2 years and had suffered many of the complications of severe disease including small stature, delayed puberty, osteoporosis, and joint destruction. He had had many drug treatments (steroids, nonsteroidal antiinflammatory drugs, penicillamine, methotrexate, ciclosporin, intravenous immunoglobulin, rifampicin, isoniazid, and etanercept) and many operations (synovectomy, supracondylar osteotomies, replacement of one hip at age 12, the other hip at age 19, knees at ages 15 and 17, and cervical fusion and odontoidectomy). He has an electric wheelchair and is about to learn to drive a modified car. In spite of all his troubles he is now at university.
This young man has been prepared gradually for transfer to adult care since the age of 11 when the suggestion that he should be seen alone in clinic, or choose who should attend, was introduced. The eventual transfer to adult care was discussed from the age of 15. When the transfer occurred he was seen initially in a young adult clinic with his paediatric rheumatologist present. An individualised transition plan was worked out that referred to transitions in health, home activities, and educational and career plans. Control of disease activity needs to be as good as possible at the time of transfer and parental anxiety needs to be anticipated. Adolescents with chronic disease often know surprisingly little about their disease (for instance, two thirds of adolescents with JIA in a recent study were unaware of what the letters JIA stood for).
Disease education should be reviewed before transfer. Young people with chronic disease need careful preparation for transfer to adult care and professionals who care for young people, both paediatricians and specialists in the medicine of adults, should be trained in adolescent health.
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