Abstract 13080: Transition Readiness in Adolescents With Heart Disease as Perceived by Their Parents: Do Parents and Teens Agree?

Introduction: Transition is defined as “the process by which adolescents and young adults with chronic childhood illnesses are prepared to take charge of their lives and their health in adulthood”. Knowledge deficits and lack of transition readiness (TR) in 13-25 year olds with congenital or acquired heart disease have been previously reported. The aim of this multicenter study was to examine agreement between parental perceptions of their adolescent’s TR (knowledge, self-efficacy, self-management behaviors) and adolescent self-reported TR. Methods: Adolescents (n=175), age 13-18 yrs, and their parents completed the TR Assessment utilizing an e-tablet, web-based format at a routine clinic visit. Parent responses to the survey were compared to the teens’ self-reported responses and items of greatest disagreement identified. Results: Median patient age was 15.7 yrs. Parents perceived knowledge deficit scores (% of items with no reported knowledge) were significantly higher than self-reported by teens, 29.2% vs 25.9% p=.01. On a 100-point scale (higher = better), the mean score for self-efficacy was significantly lower as perceived by parents than by teens, 58.6 ± 21.1 vs 68.2 ± 18.3 (p<.0001), but parent and teen reports of self-management were not significantly different, 39.5 ± 15.2 vs 41.0 ± 15.8 (p=.27). For specific knowledge deficits, overall agreement ranged from poor to fair (kappa 0.07-0.41), highest for name of heart condition/surgery (0.41), poor for exercise/sports allowed (0.10) and follow-up needs (0.10). In patients on medications (n=94), agreement was moderate for medication purpose (0.42) and refill (0.46), but poor for name (0.17). For self-efficacy and self-management, agreement also ranged from poor to fair (kappa =0.16-0.29); parents more often perceived that their teen understood what the doctor said, but overestimated how difficult it was for the teen to talk to the doctor/nurse. Teens tended to request information more often than their parents (79% vs 65%, p=.06) and information requested varied (pregnancy/contraception, communication, insurance). Conclusion: Parents and teens differ in their perceptions regarding TR. Routine TR assessment is important to identify transition needs for both patients and their parents.