Transition from Pediatric to Adult Healthcare: Assessment of Specific Needs of Patients with Chronic Endocrine Conditions

Abstract

Background/Aim: Transition from pediatric to adult care is a challenging turning point. The aim was to evaluate the transition process and needs expressed by patients with chronic endocrine conditions at transition in order to ensure program optimization. Methods: Prospective assessment of the transition period was conducted through completion of standardized questionnaires given to targeted patients. Two types were created: (1) a general questionnaire (GQ) addressing universal aspects of transition, and (2) a specific questionnaire (SQ) exploring concerns related to each endocrine condition. Three endocrinopathies (congenital adrenal hyperplasia, hypogonadotropic hypogonadism and growth hormone deficiency) were selected for assessment since they present specific challenges requiring characterization. Results: Over the last decade, 244 patients in transition were registered in our department and 153 were included since they presented one of the endocrinopathies selected. A total of 73 subjects completed both the GQ and the SQ. Over 80% of the patients were satisfied with the transition process in terms of organization, accessibility and medical care. The actual age of transition corresponded for most to the age considered by patients as ideal for transition. SQs identified psychosexual issues that must be addressed more systematically. Conclusion: This study identified key elements allowing the creation of an improved transition program tailored for our center and for each endocrine condition studied.