Assessing the Congruence of Transition Preparedness as Reported by Parents and Their Adolescents with Special Health Care Needs

Several studies have investigated how prepared adolescents are to transition to adult health care and barriers to transition for adolescents with special health care needs. The majority of these studies, however, have only assessed these experiences from the parents' point of view. Our study aims to assess the congruence of adolescents and parents reported transition planning and the factors associated with planning. A secondary data analysis was conducted using telephone survey data. Data were collected from parents and adolescents with special health care needs who received health care through Florida's Title V public insurance program. The final sample included 376 matched pairs of adolescent-parent surveys. To assess health care transition planning, respondents were asked if discussions had occurred with the adolescents' doctor, nurse, or with each other. Parents reported higher levels of planning than adolescents. Results show the lowest level of agreement between the parent and adolescent reports (kappa < 0.2) and the highest level of agreement when parents and adolescents were asked if they discussed transition with each other (kappa = 0.19). Regression results suggest that older adolescents are more prepared (vs. younger) and that adolescents whose parents have lower educational attainment are less prepared for transition. Results from this study suggest that there may be miscommunication around discussions related to transition, although further research is warranted. It is important to ensure that adolescents, not just parents, have a thorough understanding of transition since they will ultimately be responsible for their own health care once they reach adulthood.