Context 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. Objective To measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP. Methods 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). Results 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). Conclusion 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.

We previously showed that hyperphagia affects quality of life of craniopharyngioma (CP) survivors. Characteristics of hyperphagia are unknown. This study aimed to characterize and quantify hyperphagia in CP survivors with and without hypothalamic obesity (HO). Forty caregivers responded to online questionnaires including the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) and Food Safe Zone (FSZ). Caregivers reported significantly more comorbidities in survivors with HO, with 82% presenting with hypothalamic syndrome. Survivors with HO had higher hunger, lower satiety, and higher food preoccupation. Hunger impacted many life aspects with more extreme manifestations described in the HO group. HQ-CT scores were significantly higher in survivors with HO with levels similar to Prader-Willi syndrome (PWS), and were associated with weight status, hunger levels and satiety. HO diagnosis, hyperphagia, and food preoccupation predicted HQ-CT scores. We found that caregivers of survivors with HO used many food safety tactics. FSZ scores were significantly higher in the HO group, associated with survivors’ hunger and satiety levels, HQ-CT, and food preoccupation scores. In conclusion, eating behaviors in CP survivors are on a spectrum of manifestations between normal eating behaviors to severe hyperphagia characteristic of PWS in survivors with HO, calling for early diagnosis in this population.

Background/Objectives: While the number and severity of comorbidities affecting survivors of craniopharyngioma (CP) are well documented, little is known about the perspectives of caregivers and survivors regarding treatment priorities. This study aimed to describe the views of caregivers and self-reported survivors on the comorbidities that most significantly impact CP survivors and to identify areas where new treatments are most needed. Methods: Completed surveys of 161 participants recruited in the hypothalamic–pituitary brain tumor patient registry were analyzed. Results: Participants represented 40% caregivers (mostly children) and 60% adult CP survivors, with notable differences in disease duration, age, CP onset, and living conditions. Seventeen health challenges were identified as most important by more than 50% of participants, including symptoms characteristic of hypothalamic dysfunction, neurological issues, and visual impairment. Notably, those differed from the most frequently experienced symptoms. No significant differences emerged between the two groups except for polydipsia, which had a greater impact on self-reported survivors. Most challenges primarily affected the survivors’ daily functioning; however, abnormal social behaviors equally impaired their ability to achieve long-term goals. Temperature dysregulation was the only symptom not deemed very or extremely important in prioritizing new treatment development. Both groups generally aligned on treatment priorities, though survivors placed a modest but significantly greater importance on fatigue and excessive daytime sleepiness, while caregivers placed a modest but significantly greater importance on obesity. Conclusions: Real-world survivor and caregiver perspectives on priority symptoms and treatments can inform care management, strengthen support strategies, and guide patient-focused drug development meaningful to CP survivors.