ESPE Abstracts

Objective: Hypothalamic dysfunction is a rare condition and can be encountered in patients who have been diagnosed or treated for a suprasellar brain tumor. Due to its rarity, signs and symptoms of hypothalamic dysfunction may be difficult to recognize, leading to delayed diagnosis of the suprasellar brain tumor or to difficulties in finding the health care expertise for hypothalamic dysfunction after tumor treatment. To improve care and outcome of patients with acquired hypothalamic dysfunction, professionals are required to understand the patient needs.

Design: A world-wide online survey was distributed from April 2022 to October 2022 to patients with childhood onset hypothalamic dysfunction following a brain tumor.

Methods: Patients were notified upon the survey through patient advocacy groups, the SIOPe craniopharyngioma working group and the ENDO-ERN platform.

Results: In total, 353 patients with hypothalamic dysfunction following craniopharyngioma (82.2%), low grade glioma (3.1%) or a pituitary tumor (8.2%) responded to the survey. Sixty-two % had panhypopituitarism. Obesity (50.7%) and fatigue (48.2%) were considered the most important health problems. Unmet needs were reported for help with diet, exercise and psychosocial issues. Patients’ suggestions for future research include new treatments for hypothalamic obesity and alternative ways for hormone administration.

Conclusions: According to the patient perspective, care for acquired hypothalamic dysfunction can be improved if delivered by experts with a holistic view of the patient in a multidisciplinary setting with focus on quality of life. Future care and research on hypothalamic dysfunction must integrate the patients’ unmet needs.