Using Qualitative Perspectives of Adolescents with Sickle Cell Disease and Caregivers to Develop Healthcare Transition Programming.

Youth with sickle cell disease (SCD) are living longer, requiring transition from pediatric to adult health care. Transition programs have been created to improve transition readiness and help patients take responsibility for their health. The aim of this study was to explore the usefulness of current transition materials and identify unmet transition needs from the perspective of adolescents with sickle cell disease (SCD) and caregivers to refine transition programming and interventions. Focus groups were conducted with 14 adolescents with SCD (Mean age = 14.6 years, SD = 1.9) and 20 caregivers (Mean age = 43.2 years, SD = 9.3) to gather perspectives about transition to adult care, current transition program materials and recommendations for future programming. Four themes emerged: (a) transition skills and knowledge needs, (b) change in health care responsibility, (c) concerns with adult SCD care, and (d) useful transition readiness strategies and resources. The findings of this study were used to develop Web based educational modules, experiential transition skills learning, and an adolescent and caregiver hematology support group. Findings highlight the need to conduct periodic readiness assessments, provide opportunities and scaffolding to learn skills based on readiness level, and help build social support networks to encourage and facilitate learning.

Genetic education and sickle cell disease: feasibility and efficacy of a program tailored to adolescents.

Sickle cell disease (SCD) genetic knowledge is important when individuals make reproductive decisions. This study assessed feasibility and efficacy of delivering basic genetic information to 101 adolescents with SCD. Participants completed a questionnaire to test SCD genetic knowledge at 3 timepoints: before genetic education session (pretest), after the session (posttest), and 6 months later (follow-up). Scores at 3 timepoints were compared by Wilcoxon signed-rank tests, and group differences were compared by Wilcoxon-Mann-Whitney and Kruskal-Wallis tests. Participants' median scores significantly increased from pretest to posttest and from pretest to follow-up. Males had a greater change in scores than females. Scores decreased slightly from posttest to follow-up. Participants with HbSS/HbSß°-thal genotype and participants with more prior pain episodes exhibited a smaller increase in median scores than those with HbSC/HbSß⁺-thal genotype and no prior pain history; however, all groups had substantial gains from pretest to posttest and follow-up tests demonstrating that adolescents with SCD can learn basic genetics. This study established that genetic education can successfully be incorporated in transition to adult care programs for adolescents with SCD. Genetic education should be included in the standard plan of care for adolescents with SCD to assist them in making informed reproductive choices.

A transition pilot program for adolescents with sickle cell disease.

INTRODUCTION: Transition from pediatric to adult care is challenging for adolescents with chronic illnesses, including those with sickle cell disease (SCD). We describe a pilot program created to facilitate transition from pediatric to adult care by helping adolescents with SCD identify an adult medical home. METHODS: We investigated the feasibility of this program by evaluation of overall participation, satisfaction, and acceptance. A secondary objective was to compare the proportion of adolescents who fulfilled a first appointment with an adult hematologist among participants and nonparticipants. RESULTS: During the first 18 months of the program, 83 adolescents were invited and 34 (41%) agreed to participate; 25 (74%) completed their first visit within 3 months after leaving the pediatric program, compared with 16 of 49 (33%) of nonparticipants (p = .0002). Overall, 41 of 83 adolescents (49%) completed an appointment with an adult SCD program, regardless of program participation, in contrast with 11 of 75 adolescents (15%) who did so during the 18 months before the program was created (p < .0001). DISCUSSION: This transition pilot program was feasible, and most adolescent participants with SCD established an adult medical home.