Title: Prospective Evaluation of Patient Readiness to Transition to Adult Urologic Care
Purpose: Many pediatric urological conditions are chronic in nature and require lifelong urologic surveillance to preserve renal function, promote continence, and maintain sexual/reproductive health. With improved survival rates, more pediatric patients will need transition to adult care, thus creating a unique opportunity to facilitate a smooth and accommodating transition from pediatric to adult healthcare. Our goal was to assess the awareness and readiness of both patients and parents regarding the transition process to help improve the transition process at our institution.
Methods: All children who were older than 14 years of age and seen in our spina bifida clinic were approached and prospectively enrolled. Surveys were distributed to both the patient and his or her parent. Questions focused on awareness of both the need for long-term urologic follow-up and the patient's desire to learn more about the process. Sexual and reproductive health was addressed. Finally, fears of both patient and parent regarding transition were also assessed. Survey accrual is ongoing.. Fischer's exact test was used to compare between patients and parents and p<.05 was considered significant.
Results: A total of 20 surveys were prospectively collected, 9 from patients and 11 from parents. Fourteen of the respondents were females and 6 were males. The mean age for patients completing the survey was 18.7 (14-27). Figures 1-3 show results from both the patients and parents. Interestingly, 33% of patients and 18% of parents said they never wanted to transition(p=.33). Forty-four percent of parents had questions regarding their children's sexual and reproductive health, 40% had talked with their child about sex, and 55% wanted the urologist to discuss these issues with their child. Only 22.2% of patients were comfortable discussing sexual health topics with their urologist. The only significant difference between patient and parent responses was how much he or she thought about the transition process, 22.2% and 82%, respectively (p=0.02).
Conclusion: Transitioning to adult urologic care is a necessity for many pediatric urology patients with chronic conditions. While physicians are adapting to and implementing specialized clinics designed to transition patients into adult healthcare, parents are significantly more aware of transitioning than their children. Acknowledging and understanding the concerns of patients and families will help to optimize their transition to adult urologic care.