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Characteristics of Participants In a Mentored Transition Program for Chronically Ill Teens

Saturday, October 20, 2012: 8:38 AM
Room 270 (Morial Convention Center)
Laura E. Dingfield, MD, Stefanie Ruffolo, Dava Szalda and Elizabeth Wallis, General Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA

Objectives: Ninety percent of children with special health care needs are living into adulthood, necessitating the transition from pediatric to adult healthcare. Adolescence is also a time of social transition associated with increasing autonomy, engaging in risk taking behavior and transition from high school to secondary school or employment, all of which may influence healthcare outcomes. Transition skills and readiness in chronically ill teens, may also be affected by variability in severity of disease, parent-teen relationship and perceived autonomy. Parents and teens report a lack of guidance and education on the logistic challenges that comprehensive transition entails, including social transitions. Programs designed to address gaps in parent and teen education on transition are being developed to address these needs of adolescents facing health care and social transitions. Data is lacking about the specific needs of this population, including readiness-to-transition.

Methods: Participants were recruited to participate in the program from primary and specialty care clinics at an academic children’s hospital. Mentors for the program were recruited from local universities. Programming was discussion-based, and focused on the social, medical and logistic challenges of attending college with a chronic illness. Prior to beginning the program, teens completed a demographic questionnaire, as well as the Transition Readiness Assessment Questionnaire (TRAQ); parents completed a modified TRAQ.

Results: Mean (range) age was 16.9 (15-19) years, with 50% female, and 60% Caucasian. Participant diagnoses included sickle cell disease, Crohn’s, muscular dystrophy, lupus, and seizure disorder. The average (SD) number of prescribed medications was 5 (4.8). Participants reported a mean (SD) 1.78 (2.4) emergency department visits and 2.2 (3.2) hospitalizations in the 12 months prior to the program. Parents and teens assessed the teen’s readiness to transition differently. In their responses on the TRAQ, parents reported that teens were less likely to fill their own prescriptions (p = 0.037) and take their own medications (p = 0.0138) than teens self-reported. Compared to teens, parents also were less likely to report that teens were comfortable discussing their illness with others (p = 0.0063).

Conclusions: Adolescence is a time of increasing independence and social transition. Teens with special healthcare needs may face additional challenges, as they must also transition from pediatric to adult healthcare and accept increased responsibility for their own disease management. Parents and teens vary in their assessment of teen’s readiness to transition. Group programs like the one described may help align parents and teens in their assessment of a teen’s readiness to transition, as well as providing both groups with the skills necessary to transition successfully. Future research will focus on whether participation in educational program improves teen readiness to transition.