Hyperphagia in craniopharyngioma- a real-world study from the international hypothalamic-pituitary brain tumors patient registry

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.