Endocrine Abstracts

JOINT1604

Background: Childhood-onset growth hormone deficiency (CO-GHD) can vary in cause and severity. Managing the transition of patients with CO-GHD into adulthood can be challenging with regard to reconfirming GHD (when and how) and continuing GH treatment (dosing) as well as determining transition readiness.

Objective: A survey was performed amongst all accredited pediatric endocrinologists in The Netherlands aiming to gather valuable insights into current practices regarding the transition of care for adolescents with CO-GHD.

Results: The survey was completed by 33 respondents (67%). Of them, 58% works in a university hospital and 42% in a general hospital. All participants indicated to stop GH in adolescents with idiopathic isolated GHD and reconfirm the diagnosis. In case of pathogenic gene variants causing isolated GHD, the majority would stop (65%). Also, in tumor-related GHD (even after high dose radiation (>40 Gy)) and adolescents with midline abnormalities, the majority would stop GH and retest (68% and 79%, respectively). However, in case of ≥2 additional pituitary hormone deficiencies 65% indicated they would continue GH. If indicated, GHD is reconfirmed using serum IGF-I levels and/or GH provocation tests. Forty-four percent of the participants indicated that an IGF-I level >0 SDS excluded adult GHD. The most frequently performed GH provocation test was the GHRH-arginine test, but since GHRH is no longer available, most use either arginine or clonidine provocation test (65%) and 14% use the insulin tolerance test. In case of persistent GHD, GH dosages vary widely, from 0. 3 mg/day (39%) to restarting with 0. 7 mg/m²/day and slowly lowering the dose (18%) or GH titration aiming at IGF-I levels being -1 to +1 SDS (43%). Transition readiness is assessed in consultation with the patient (83%), with the majority indicating that there are no clear guidelines and/or programs used (80%). Most patients are transferred to adult endocrine care at 18 years of age (93%), either using a referral letter (59%) or during a single JOINT consultation (35%).

Conclusion: There are considerable differences in local policies with regard to confirming persistent GHD and GH dosing after adult height attainment. Furthermore, the transition of care to adult services is not uniformly organized. It is important to also evaluate the consequences of different approaches in terms of e. g. body composition and bone development and develop a national guideline.