Available online 21 January 2023

Transition readiness was classified as good in a majority of patients with congenital adrenal hyperplasia

A good transition readiness was more frequent in young patients with good medication adherence rates

Our results demonstrate a positive relationship between transition readiness and Quality of Life

The answers to the open-ended questions highlighted how adolescents were uncertain of how to adjust their medication during periods of acute illness

Congenital adrenal hyperplasia (CAH) refers to a group of genetic disorders that affect cortisol biosynthesis and the need for glucocorticoid treatment is lifelong. The complexities of CAH can greatly affect teenage life and the transition from pediatric to adult care. The aim was to assess transition readiness and the impact on quality of life (QoL) as well as medication adherence rates in adolescents and young adults with CAH.

Prospective assessment of transition readiness was conducted through standardized questionnaires for adolescents and young adults (aged 16-35). Four open-ended questions on self-care were summarized in adolescents (aged 18-19) and their parents.Transition readiness was assessed using a modified CAH specific questionnaire: “Transition preparation and readiness to transfer from pediatric to adult care” with a cutoff level of > 25 defined as good transition readiness. Measurement of QoL was performed using Rand 36. Medication adherence rate was measured using the self-reported questionnaire Adherence Starts with Knowledge.

Thirty-eight adolescents and young adults with CAH were included in the study. Transition readiness was classified as good in 26 (68%) of the participants. Good transition readiness was more frequent in participants with good medication adherence rates.A general linear model analysis showed a good transition readiness affected QoL by increasing QoL scores.

Self-reported transition readiness was found in the majority of adolescents and young adults with CAH. A good medication adherence rate was associated with a better transition readiness and a good transition readiness was associated with increased QoL scores.

Congenital Adrenal Hyperplasia

transition

young people

adherence and Quality of Life

© 2023 Published by Elsevier Inc. on behalf of the AACE.