Transfer from the paediatrics to the adults cystic fibrosis clinic

Transfer from the paediatric to the adult clinic

Jan, 2001. Transfer from paediatric to adult clinic [online]. Seacroft and St James's University Hospitals, Leeds, UK. Available from http://www.cysticfibrosismedicine

Paediatric CF units should have a planned programme for transferring patients to an adult CF unit and patients should know that they will move on. Unfortunately, obstacles to transfer still persist in many clinics, especially in the USA, but also in some non specialist paediatric units in the UK. These obstacles take the form of lack of parental/patient confidence in the adult unit, unwillingness to leave the paediatric unit and its longterm relationships and protective environment, and a perceived lack of confidence in the paediatric unit staff of the abilities of the adult unit to offer the same level of care (Anderson et al, 1999).

Transfer from the paediatric to the adult CF team is a hugely important milestone for the patient and the family and must be handled sensitively. Patients should be transferred to an adult clinic at around the age of sixteen years (Conway & Littlewood, 1990), but the exact timing must be flexible, depending on the health of the patient and individual variations in physical and emotional maturity (Conway, 1998). Transfer is more easily managed in large centres and more easily achieved when the paediatric and adult clinics work closely together. In Leeds there has been an endeavour to smooth the transfer by holding a "Young Adults'" or "Transition" clinic in the Paediatric CF Unit to which patients are transferred at around 14 years. The young adult clinic is held on a different day to the twice weekly paediatric clinics. The physiotherapist, CF nurse specialist, and dietitian from the Adult CF Unit, as well as the paediatric staff, attend and provide nursing and physiotherapy input to the clinic. The consultant from the Adult CF Unit or the paediatric medical staff see the patients. The patients attend this clinic until around 16-18 years when they are taken around the adult unit by one of the CF nurse specialists to meet other members of the Adult CF team. Thereafter, if admission is required it is arranged at the Adult CF Unit and the patient then attends the outpatient clinic at Seacroft. This gradual patient dictated transition works well and appears to have been acceptable to most patients and families (Southern et al, 1994, Conway, 1998). Transfer does not have to be a discreet event, but should be seen as a gradual process.

Transfer of patients can also be a difficult time for the paediatric staff who have to "let go" of patients for whom they have cared for many years. They must also be supported. It is particularly important that patients who have been attending their local hospital paediatric clinic are transferred to a specialised Adult CF Unit rather than to the local chest physician alone (Walters et al, 1994). Shared care between the specialised unit and the local adult physician can then be arranged if requested. Practical local problems of busy clinics, few CF patients and limited experience with the disease, and lack of a supporting team of nurse specialists, physiotherapists and dietitians necessitate that there should be more regular contact with the Adult CF Unit. Some physicians caring for adult patients believe that all adults should attend CF Centres because of the many potential problems requiring specialist expertise that are likely to occur in the older patient with cystic fibrosis.

References

Anderson DL, Flume PA, Beasley PJ. A survey of the transitional process from paediatric to adult clinics in US CF centers. Pediatr Pulmonol 1999; Suppl 19: 330.

Conway SP. Transition from paediatric to adult orientated care for adolescents with cystic fibrosis. Disability and Rehabilitation 1998; 20: 209-216. Conway SP, Littlewood JM. The provision for adults at the Leeds Regional CF Unit. ACFA Newsletter. December 1990, pp 4-5

Southern KW, Prescott JH, Conway SP, Littlewood JM. Transfer of care from paediatric to an adult cystic fibrosis unit.19th European CF Conference, Paris, 1994: p160

Walters S, Britton J, Hodson ME. Hospital care for adults with cystic fibrosis: an overview and comparison between special cystic fibrosis clinics and general clinics using a patient questionnaire. Thorax 1994; 49: 300-306