It is often said that the transition from paediatric to adult care should be seamless. At the same time, the first visit to an adult clinic is a time to stop, take stock and reorganise. Clinicians must be aware of the importance of this first visit in overcoming the disillusionment that often is felt by an individual as they leave the cosy world of a paediatric service and move into the busy, fragmented world of adult care. However thoroughly a child coming up for transfer is prepared, organising the reception to adult clinic is vital and time-consuming. This time it is enormously well spent in establishing a relationship that might continue for 80 years.
The first most important issue is to establish the equivalence medical knowledge of everyone involved. It is still the case that paediatric consultations often occur between parents and doctor leaving the affected child as a bystander. Very soon, it will be impossible for doctors to discuss medical details with parents once adult independence is achieved. This can be a frustrating change for parents who are used to organising their child's health care and might have expected to do so into adult life -- a particular problem in Turner syndrome. Second, it is important to transfer the detail of medical knowledge and pathogenesis into adult language. However comfortable with a paediatric service might have been in discussing sexuality and fertility, it can still be unnerving for a patient to have these issues and move to the top of the agenda. While much of the focus of paediatric care is the attainment of final height, in the adult service the focus changes to quality of life in both the short-term and in the long-term with preventative health strategies. Unless these goals are defined as an early stage the whole point of attending clinic on a regular basis may be lost.
Lastly, it is often uncomfortable for patients to take on the busy, sometimes impersonal atmosphere of adult clinic. Increasingly we must accept that clinic visits will offer only a small part of a health service. Medical information in the adult field will come from internet sources, self-help books, and support groups. It is important that an adult service defines how it fits into this jigsaw so that both doctors and patients become comfortable in the fact that there is no longer any control over medical information.
03 - 04 Dec 2001
Society for Endocrinology