Raymond A. Wood Foundation, Ocean City, MD 21842, USA.
J Clin Endocrinol Metab. 2023 Dec 21;109(1):e76-e87. doi: 10.1210/clinem/dgad488.
Craniopharyngioma (CP) is a rare brain tumor associated with severe comorbidities that reduce survivor health-related quality of life (HRQOL). However, CP impact on caregivers is unknown.
To measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP.
Eighty-two participants who self-identified as caregivers of CP survivors responded to an online survey including caregiver-reported Pediatric Quality of Life Inventory (PedsQL), and the Zarit Burden Interview (ZBI).
Caregivers reported an average of 13 out of 29 health conditions in survivors following tumor treatment, including excess weight, hypopituitarism, fatigue, mood, cognition, social issues, temperature dysregulation, visual impairment, and sleep problems. Strikingly, 70% of survivors who experienced obesity also experienced hyperphagia. ZBI scores were moderate with a median of 37. PedsQL total scores were poor with a median of 46.2. ZBI scores were independent of caregiver level of education and care duration. Both scores were independent of income, survivor age, gender, age at diagnosis, or tumor recurrence. In contrast, both scores depended on the number (P < .001) and the type of survivor health problems, with significantly worse scores for caregivers or survivors with symptoms of hypothalamic dysfunction (P < .001) including hyperphagia but not obesity. PedsQL total scores significantly predicted ZBI scores (P < .001).
Survivor poly-symptomatology predicted and incurred significant caregiver burden. Our study separated hyperphagia and obesity and identified hyperphagia and other hypothalamic dysfunction symptoms as understudied issues. Altogether, these findings draw particular attention to the unmet needs of CP survivors and their caregivers.
颅咽管瘤（CP）是一种罕见的脑肿瘤，常伴有严重的合并症，降低了幸存者的健康相关生活质量（HRQOL）。然而，CP 对照顾者的影响尚不清楚。
测量照顾者的负担，并研究其与幸存者 HRQOL 及 CP 中其他决定因素的关系。
82 名自我认同为 CP 幸存者照顾者的参与者在线回答了一份调查问卷，其中包括照顾者报告的儿童生存质量测定量表（PedsQL）和照顾者负担量表（ZBI）。
照顾者报告称，在肿瘤治疗后，幸存者有 13 种健康状况（29 种中），包括超重、垂体功能减退、疲劳、情绪、认知、社会问题、体温调节障碍、视力障碍和睡眠问题。引人注目的是，70%经历肥胖的幸存者也经历了食欲过盛。ZBI 评分中等，中位数为 37。PedsQL 总评分较差，中位数为 46.2。ZBI 评分与照顾者的教育程度和照顾时间无关。这两个评分都与收入、幸存者的年龄、性别、诊断时的年龄或肿瘤复发无关。相反，这两个评分都取决于幸存者健康问题的数量（P <.001）和类型，下丘脑功能障碍（包括食欲过盛但不包括肥胖）的症状与照顾者或幸存者的评分更差（P <.001）。PedsQL 总评分显著预测 ZBI 评分（P <.001）。
幸存者的多症状预测并导致了显著的照顾者负担。我们的研究将食欲过盛和肥胖分开，并确定了食欲过盛和其他下丘脑功能障碍症状是研究不足的问题。总的来说，这些发现特别关注 CP 幸存者及其照顾者的未满足需求。
