Health Care Transition in Youth with Type 1 Diabetes: Qualitative Analysis of Patient and Parent Perspectives

Presentation Number: SUN 613
Date of Presentation: April 2nd, 2017

Katharine C. Garvey*1, Tess Buccigrosso1, Taylor Dean1, Hana Gragg1, Chelsea Johnson1 and Lori M Laffel2
1Boston Children's Hospital, Boston, MA, 2Joslin Diabetes Center, Boston, MA

Abstract

Background: Lack of effective transition from pediatric to adult health care may contribute to adverse outcomes for youth with type 1 diabetes. Understanding patient and parent views of transition is important to guide transition care improvements.

Objective: To explore older adolescent, young adult and parent experiences of diabetes self-care, transition readiness, and diabetes care delivery at a tertiary pediatric center.

Methods: We conducted 9 focus groups in a purposive sample of patients ages 15-25 years with type 1 diabetes of ≥1 year duration and parents of the adolescent patients. The sample included 3 groups of 15-17 year-old adolescents; 3 groups of parents of the adolescents; and 3 groups of 18-25 year-old young adults. A multidisciplinary team conducted iterative thematic analysis of transcripts, with deductive and inductive coding aided by NVivo software.

Results: Sixty-four subjects (22 teens, 23 parents, and 19 young adults) participated. The sample was 72% female, 84% white, 13% black and 3% Asian; 5% were Hispanic, and 80% were privately insured. Mean diabetes duration was 6±3 years for teens and 9±5 years for young adults; HbA1c was 7.8±1.0% for teens and 8.0±1.4% for young adults. Four key themes across the groups emerged. 1) Challenges with adherence to diabetes self-care: teens endorsed feeling “lazy” and struggling with motivation, concerns echoed by parents, while young adults articulated struggles with diabetes “burden” and “burnout.” 2) Lack of awareness about diabetes physiology and complications: teens and young adults reported not understanding type 1 diabetes “biology,” the meaning of HbA1c, or the need to screen for diabetes complications; a disconnect between patient and parent perceptions suggested that counseling by pediatric providers may be heard by the parents and not the youth. 3) Ignorance about transition: teens “hadn’t thought” about transition, young adults had received minimal transition counseling, and most parents were unaware that transition preparation is needed. 4) Group-specific transition fears: all groups expressed anxiety about transition, but teens were emotionally attached to pediatric providers and fearful about “not being known” by adult providers, while young adults focused more on care systems, using words such as “dark,” “gloomy” and “unsupportive” when referring to adult care; parents were anxious that “letting go” of control over care would compromise their child's health.

Conclusions: Our results suggest areas for transition improvement for youth with type 1 diabetes, including enhanced teen and young adult engagement in counseling about diabetes care and complications, focused transition preparation for teens and young adults, and increased communication between pediatric providers and parents to support these goals.

 

Nothing to Disclose: KCG, TB, TD, HG, CJ, LML