A 1996 report (1) by the Royal College of Physicians (RCP) focused attention on the previously neglected area of adolescent medicine in the United Kingdom (UK). It also highlighted the need for a formal process of transferring the care of young adult patients with chronic diseases from pediatric services to adult physicians. Since then Aynsley-Green et al. (2) have stressed the needs of adolescent patients and we are currently awaiting the publication of a report from an intercollegiate working party hosted by the Royal College of Paediatrics and Child Health on Health Services for Adolescents.
In a review article, Viner (3) has identified the issues and made sensible recommendations for best practice in the transfer of care for young adults with chronic disease. This includes the establishment of programs with specific `transitional' or `young adult' clinics. He points out that the supportive literature and previously published guidelines are largely anecdotal with most of the work coming from America and Australia where private medicine is the norm and sub-specialization is much more widespread than in the UK.
Earlier this year, Baldassano et al. (4) published the recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) with respect to the transition of care for the pediatric patient with inflammatory bowel disease (IBD) from pediatric gastroenterologist to internist-gastroenterologist. This paper has much in common with both the RCP Report (1) and Viner's suggestions (3). It describes the generic needs of the adolescent patient with a chronic disease as well as the more subtle psycho-social forces at work in a doctor-patient relationship that has been built up over many years. The authors emphasize the need for pediatric gastroenterologists to care for children with IBD but insist that adult gastroenterologists have different skills that are necessary to provide optimum care to older patients. They highlight problems with pregnancy, higher education, and obtaining insurance (which is less applicable in the UK). The paper also makes the following specific points (4):
- Adolescent patients should start to be seen without their parents before transfer in an effort to build a therapeutic relationship that promotes independence and resembles the relationship the patients will have in the future with their physician.
- It is essential to introduce the family to the concept of transition early. The benefits must be emphasized, including the promotion of independent behavior and the planning of long-range goals in a more appropriate environment for treating young adults.
- The patient and family should be made aware that an adult needs a physician with different experience and skills to deal with specific problems that are not usually encountered by the pediatrician. At the same time, the physician must appreciate the subtle differences between patients who have had a chronic disease that presented in childhood and those who present in later life.
- The timing of transition requires flexibility, varies between individuals, and will depend on life circumstances.
THE UNITED KINGDOM
The National Health Service (NHS) is free at the point of access and the majority of children with chronic gastroenterological disease in the UK are looked after exclusively in the public sector. The NHS also differs significantly from most other health services in the developed world in that the hospital specialist is assisted by a primary care doctor or general practitioner who is the first point of contact for a child with an unscheduled or emergency problem. This doctor does not change and will continue to coordinate the routine primary care and prescribe medications for the young adult. This adds stability despite the transition between specialists at the hospital level.
The financial and professional structure of the NHS makes it possible to run transitional adolescent clinics that are attended jointly by the pediatric gastroenterologist and the adult gastroenterologist who will eventually take over the care. These clinics can take place in the same hospital that the patient attended as a child and can use the same records and diagnostic facilities. This ensures a smooth transfer between different arms of the same service.
In April 2001, in an effort to survey the provision of transition clinics, we identified and contacted consultant pediatric gastroenterologists and hepatologists working in the UK and Ireland. We asked them to complete and return a simple questionnaire regarding the details of transition clinics held in their units.
We received replies from 28 of 31 units and found that only 11 of those units were running transition clinics; 9 involved a joint consultation with an adult gastroenterologist or hepatologist and 2 involved a consultation with an adult surgeon. The frequency of the clinics varied between 2 and 12 a year. All the clinics were within normal working hours although one clinic ran into the evening and one center arranged clinics during school holidays.
SUGGESTED GUIDELINES FOR TRANSITION CLINICS
In addition to principles discussed earlier, transition clinics should be based around the following concepts that we have developed from Viner (3).
- The clinic should be held at a time that is convenient to the young person to encourage good attendance. It should be free from both young children and older adult patients who may exhibit complications that are best avoided at this stage.
- Both the pediatrician and physician should be present as well as other health care professionals such as specialist nurses and dietitians.
- This clinic offers an opportunity to review the patient's management and the first visit should be preceded by a summary of the clinical details, a copy of which should be provided for the patient and family. It should also be used to promote general health education, which is of particular significance to the young adult with a chronic problem such as IBD.
The British Society for Paediatric Gastroenetrology, Hepatology and Nutrition (BSPGHAN) does not have published recommendations on the transfer of care between pediatric and adult services. In this letter we have augmented the excellent recommendations from NASPGHAN with further suggestions for the development of transition clinics for adolescents with chronic gastrointestinal disease. We feel that this concept should be given a priority by units across the UK. Our data suggest a paucity of such provision at present.
Ieuan H. Davies, (SpR)
Huw R. Jenkins, (Consultant Paediatric Gastroenterologist)
1. Kurtz Z, Mawer C, Hopkins A (eds) Services for young people with chronic disorders in their transition from childhood to adult life.
London: Royal College of Physicians, 1996:141–153.
2. Aynsley-Green A, Barker M, Burr S et al. Who is speaking for children and adolescents and for their health at the policy level? BMJ 2000; 321:229–32.
3. Viner R. Transition from paediatric to adult care. Bridging the gaps or passing the buck? Arch Dis Child 1999; 81:271–75.
4. Baldassino B, Ferry G, Griffiths A et al. Medical Position Statement: Transition of the Patient With Inflammatory Bowel Disease From Pediatric to Adult Care: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Pediatr Gastroenterol Nutr 2002; 34:245–47.