Endocrine Abstracts

JOINT3642

Introduction: In the past years increasing priority is given to the transition from child to adult care. Goals during the transition process focus on the knowledge about the chronic condition, the ability of adolescents and young adults to manage their chronic condition, effectively utilize healthcare services, and ensure an organized and structured transfer of care and integration into adult care. In 2017 the transition service Young Adult Clinic (YAC) is launched in the Erasmus University Medical Centre. One of the tools used in the transition service is the generic transition questionnaire Ready Steady Go (RSG), for identifying gaps in knowledge, self-management skills, social skills and general health management. Since 2022, the RSG age-appropriate questionnaire has been sent annually to patients in the transition phase. For patients with adrenal insufficiency, for example congenital adrenal hyperplasia (CAH), a questionnaire regarding corticosteroid use and sick day rules is added.

Methods: We evaluated RSG questionnaires sent to eleven patients with CAH who made the transfer since the start of the annual RSG in our YAC.

Results: Two of the 11 patients started with the questionnaire in the paediatric department, at the age of 16, another two at the age of 17. In seven of the 11 patients the questionnaire was first sent when they were already in the adult care, varying in age between 18 and 21 years. One of the seven patients did not respond. At the age of 16 the two adolescents with CAH had sufficient knowledge about corticosteroid replacement therapy, but insufficient knowledge about causes and presenting symptoms of an acute adrenal crisis. After transfer to the adult clinic patients are eager to know more about their condition and are open for education, for example about side effects of medication and how to prevent an acute adrenal crisis. Most of the patients who completed the questionnaire at the age of 20 or 21 indicate to have adequate knowledge and self-management skills to manage their condition.

Conclusion: A generic questionnaire like the RSG can help identify gaps in knowledge and self-management skills in patients with CAH. Disease specific questionnaires about corticosteroid replacement therapy helps to gain specific self-management skills. The patients had comparable topics they wanted to address during consultations and showed adequate knowledge and self-management skills around the age of 21. These findings endorse the importance of starting transition early in adolescence and continuing well into adulthood.