Assessment of acquired hypothalamic obesity and fatigue burden in patients and caregivers of patients with craniopharyngioma
Daisy Duan, Hanneke M van Santen, Nathalie Kayadjanian, Jieruo Liu, Usha Mallya, Jason C Simeone, Laura Cilek, Scott L CovenAbstract
Background
Patients with childhood and adult-onset craniopharyngioma (CP), a low-grade brain tumor in the hypothalamic-pituitary region, experience persistent symptoms associated with the disease and its treatment. Tumor and treatment-related hypothalamic dysfunction increase the risk for developing acquired hypothalamic obesity (HO) and fatigue. Studies on caregiver or patient-reported symptom burden of CP, particularly those associated with acquired HO and fatigue, remain limited.
Methods
Individuals and caregivers responded to online surveys in an international hypothalamic-pituitary brain tumor registry on the patient experience of living with CP. Questionnaires captured patient demographic and clinical characteristics, fatigue severity, daytime sleepiness, impact on daily functioning, and treatment approaches. Fatigue and daytime sleepiness were assessed using validated instruments. Responses were analyzed and stratified according to respondent type and acquired HO status.
Results
103 patients (mean age: 26.0 years; SD: 16.0) with CP or their caregivers completed surveys. Respondents reported living with a high burden of disease, even many years after diagnosis. Patients with acquired HO had a higher number of comorbidities than those without acquired HO (mean 16.8 vs. 11.8 symptoms), and 72.8% of patients experienced fatigue. Individuals with acquired HO reported significantly greater fatigue, daytime sleepiness, and impairment in activities of daily living than those without an HO diagnosis. Despite widespread use, fewer than one-third of respondents found fatigue-management strategies effective.
Conclusions
Fatigue is highly prevalent among patients with CP and is more severe in those with acquired HO, creating a substantial disease burden impacting daily life. Effective treatment options remain limited, highlighting a significant unmet clinical need.