Background: Children and adults with chronic thyroid disorders (TD) need continuous monitoring as periods of inadequate thyroid hormone substitution can impact metabolism, puberty and fertility. Transition from pediatric to adult-oriented care is often characterized by discontinuity in care resulting in poor health outcomes and impaired quality of life. Transition care (TC) for young adults with TD remains largely unknown.
Objectives: To analyze the TC of patients with chronic TD and to create a specific transition passport aiming to improve patient autonomy
Methods: In this pilot project, patients followed at our tertiary care center for a chronic TD (congenital hypothyroidism, thyroiditis, secondary hypothyroidism) were contacted after transition from pediatric to adult care and asked to answer 1) a structured transition questionnaire, 2) the 26 item WHOQOL-BREF questionnaire, and 3) the 3-item "Adherence Estimator" for medical prescription .
Results: 29 patients (69% females, mean age 23,2 years (17-34) ; 41% Hashimoto thyroiditis, 24% Graves disease, 21% congenital hypothyroidism,14% other) responded. Quality of life was good or excellent in 89.8%. 27.6% did not feel well accompanied during transition. 51.7% felt that a transition involving the pediatrician and the adult specialist would be adequate, 17.2% would prefer to see the adult specialist alone. 27.6% felt that their treatment was not important. During the last month, 17.1% admitted to forget the medication 1-2 times and 17.1% more than 3 times.
Conclusion: Whilst quality of life was good, around 1/3 of the patients with TD did not feel satisfied with TC, and medication adherence seemed insufficient. Our results reflect the special attention required by young adults with chronic diseases. In order to improve TC, we developed a structured transition program including a novel interactive transition passport aiming to enhance autonomy and therapeutic adherence through education and guidance to patients and medical caregivers.
19 - 21 Sep 2019
European Society for Paediatric Endocrinology