An adolescent with a chronic condition must prepare for transition from the pediatric to the adult health care system. Ideally, transition is a purposeful and coordinated process between the two systems. We sought to evaluate a pediatric rheumatology transition clinic from the perspective of the young adults who attended the clinic.
Young adults who attended the IWK Health Centre Pediatric Rheumatology Transition Clinic in Halifax, Nova Scotia, Canada were asked to complete a mail questionnaire. In this clinic an adult rheumatologist joins the pediatric team for the patient's visit. Subjects rated satisfaction with the clinic and how completely a number of items were addressed (e.g. knowledge about disease, self-management, adolescent issues) on a 10 cm visual analog scale (higher scores reflecting more favourable assessment). Compliance with follow-up post-transfer to adult care was assessed by self-report and a chart review. Data were summarized descriptively.
The response rate was 34% (51/151). The mean age of respondents was 22 years with the majority diagnosed with juvenile idiopathic arthritis. Most patients were transferred to adult care between the ages of 17 and 20 years. The mean overall satisfaction score with the transition clinic was 7.3 ± 2.6. There was significant variability regarding how well individual transition-related items were perceived to have been addressed, with an overall mean of 6.1 ± 3.2. Items which received a majority of scores of > 7 included learning about side effects of medications, learning to live with their disease, confidence in disease management, and control of disease at transfer. Items rated as <5 by a third of respondents included addressing teen issues (smoking, alcohol, sexual health) and learning about new developments related to their condition. 74% of patients reported regular appointments with adult rheumatology.
Most young adults reported overall satisfaction with the transition clinic, however their perception of how adequately various transition issues were addressed was quite variable. It appears that there were some perceived deficits in the care that was provided in all areas, but possibly more so in counselling around general adolescent issues. There was a high rate of follow-up after transfer to the local adult clinic.