Introduction Transition is a process that addresses the medical, psychosocial and vocational needs of young adults, and it is a crucial stage for patients with CF.
Methods Patients who transferred to the adult service via a transition clinic within the last 5 years underwent an interview with a psychologist using a questionnaire of demographic data, their experience of transition, their concerns and the effect of CF on their lifestyle. They completed the Hospital Anxiety Depression Scale (HADS) and the Ways of Coping Scale. Clinical data, complications and outcomes were noted at transfer and one year later.
Results 45 patients (27 men) participated; mean age at transfer was 17 (range 15–21) years and at interview was 20.7 (17–24) years; 25 (53%) had chronic Pseudomonas infection, 7 (15.5%) were receiving gastrostomy feeding, 9 had diabetes, one had had liver transplantation and one had undergone termination of pregnancy. At the transition clinic 94% attended with a parent but after transfer 33% attended alone and 18% with a partner; 87% felt that the timing of transition was correct and 80% found the transition clinic helpful. Self-reported adherence to treatment declined in 18% and improved in 24%. Life satisfaction was high with 74% reporting that CF had no effect on their social lives, but 52% felt it impacted on work or studies, although 76% were in employment or education. Mean FEV1 remained stable at 76.6 (26.4–119.6)% at transfer and 75.4 (19–111)% one year later, but varied with 15 patients (33%) having a deterioration of >5% and 8 (18%) improving by >5%. Mean BMI changed from 20.8 (16.5–29.7) to 21.2 (17.3–29.2); 11 patients (24%) improved by >1 kg/m2, 4 (9%) deteriorated by >1 kg/m2. Psychological distress was low with 7 (15.6%) having anxiety and 3 (6.7%) depression; 84.4% used ‘optimistic acceptance’ as their main way of coping, 8.8% used ‘avoidance’ 2.2% ‘distraction’, and 2.2% ‘hopefulness’.
Conclusion Young people with CF still face daunting problems but are functioning well. There is a need for close monitoring during transition to provide treatment and support to those showing clinical deterioration.
Abott J. Disability Rehabilitation 2001;23:315.