159. Parents’ Experience of Uncertainty Related to Transfer from Pediatrics to Adult Care in Adolescents with Congenital Heart Disease

Parents play a crucial role when their children transition to adulthood. In adolescents with chronic conditions, many parents feel insecure in handing over the responsibility and letting go of control. During the transition, parents may experience even higher levels of uncertainty. The purpose of this cross-sectional study was to evaluate parents’ levels of uncertainty related to the transfer from pediatric to adult care in adolescents with congenital heart disease (CHD) and to identify potentially correlating factors. A total of 351 parents (53.8% mothers) to adolescents, 14-18 years old, born with CHD were included (35% response rate). Parental uncertainty was assessed using a Linear Analog Scale ranging from 0 (not uncertain at all) to 100 (extremely uncertain). Potential correlates were measured using the readiness for transition questionnaire (RTQ) (measuring adolescents transition readiness, adolescents’ responsibility and parental involvement) and a questionnaire for sociodemographic data/variables. An intra class correlation (ICC) analysis was performed between matched parents to investigate agreement between both parents. To explore potential correlates of the perceived level of uncertainty, univariate linear regression analyses were performed. The mean parental uncertainty score was 42.5 (SD 30.1). Twenty-four percent of the parents had a very low level of uncertainty (score 0–10) and 7% had a very high level (score 91–100). The ICC was 0.737 (95% confidence interval 0.58–0.84, p=0.005) demonstrating a good agreement between mothers and fathers, although mothers generally had a higher uncertainty level than fathers (p=0.03). This difference, however, was not clinically meaningful (Cohen’s d 0.15). The univariate regression analysis indicated that increased levels of perceived overall readiness (p=0.005) and a lower level of parental involvement (p=0.005) were associated with a lower level of uncertainty. Adolescents’ age, sex, CHD complexity, level of responsibility and parental age were not associated with uncertainty. Twenty-six percent of the mothers and 36% of the fathers reported that they had not started thinking of the transfer yet. This did not differ between being a parent of a boy or a girl, nor did the complexity of the disease display any significant differences for mothers, although it did for fathers. With increasing age of the adolescent, a smaller number of parents reported, “I have not thought about the transfer”. A wide range in levels of uncertainty was observed. There was a good agreement in the mothers’ and fathers’ perceived level of uncertainty. The level of uncertainty was not associated with adolescents’ age, gender, or disease complexity. Parents who perceived their adolescent as readier for the transition felt less uncertain with the upcoming transfer. The result also showed that a high level of parental involvement might indicate a high level of uncertainty. Still, one-third of the parents had not started to think about the transfer to adult care. These results suggest that it might be important for healthcare providers to start up an early discussion with parents about their role when their child is transitioning and preparing for transfer to adult care.