下丘脑功能障碍是一种罕见的疾病，在已被诊断或治疗过上丘脑肿瘤的患者中可能会遇到。由于其罕见性，下丘脑功能障碍的征兆和症状可能难以识别，这可能导致延迟诊断上丘脑肿瘤或在肿瘤治疗后难以找到下丘脑功能障碍的专业医疗服务。为了改善获得性下丘脑功能障碍患者的护理和治疗结果，专业人员需要了解患者需求。从2022年4月到2022年10月，我们对患有儿童发病时间的下丘脑功能障碍患者（通过患者报告确认）进行了全球范围的在线调查，该调查是在上丘脑肿瘤后发生的。通过患者倡导团体、SIOPe颅咽管瘤工作组和ENDO-ERN平台告知患者有关此调查。总共有353名患有下丘脑功能障碍的患者（82.2%为颅咽管瘤、3.1%为低级别胶质瘤、8.2%为垂体肿瘤患者）或护理人员对该调查做出了回应。其中62%患有全垂体功能减退症。肥胖（50.7%）和疲劳（48.2%）被认为是最重要的健康问题。在饮食、锻炼和心理社会问题方面，存在无法满足的需求。患者对未来研究的建议包括针对下丘脑肥胖的新治疗方法和激素管理的替代途径。根据患者的观点，如果由具有整体观点的专家在多学科的环境中，注重生活质量，提供护理，则可以改善获得性下丘脑功能障碍的护理。未来的关心和对下丘脑功能障碍的研究必须整合患者未满足的需求。

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.A world-wide online survey was distributed from April 2022 to October 2022 to patients with childhood onset hypothalamic dysfunction (as reported by patient) following a brain tumor.Patients were notified about the survey through patient advocacy groups, the SIOPe craniopharyngioma working group and the ENDO-ERN platform.In total, 353 patients with hypothalamic dysfunction following craniopharyngioma (82.2%), low grade glioma (3.1%) or a pituitary tumor (8.2%) or caregivers 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.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.