Work

SAT-106 Facilitators and barriers to exercise in pediatric craniopharyngioma survivors

Year: 2025

Type: article

Abstract: Disclosure: H. Pearlstein: None. M. Grabill: None. L. Ang: None. J. Crowley: None. I. Chacko: None. K. Wade: None. N. Kayadjanian: None. A. Wood: None. K. Ness: None. S. McCormack: None. Background: Pediatric craniopharyngioma (CP) is a rare hypothalamic/pituitary brain tumor. Treatment typically includes surgical resection, and often, radiation. Survivors have impairments in strength and cardiovascular fitness at diagnosis that persist for at least 5 years, likely contributing to excess adult cardiovascular disease mortality. CP survivors would benefit from interventions to improve these deficits, but there is little evidence to guide exercise prescriptions. The aim of this study was to assess barriers and facilitators of exercise and receptiveness to trial designs in survivors of pediatric CP and their families. Methods/Design: Participants were recruited from our clinical practice. Medical history was abstracted from the medical record, and validated questionnaires assessed physical activity. NIH patient-reported outcomes measurement information system (PROMIS) questionnaires were used to measure anxiety, depression and peer function; T-scores are generated with a population mean of 50 and SD of 10, where a higher score is more of the entity. Five focus groups with caregivers of children with CP (aged 5-11y or 12-17y) and adult survivors of CP (aged 18-26y) were conducted remotely. Focus groups were recorded, transcribed verbatim, cleaned, and deidentified. Transcripts were entered into NVivo 14 software for coding and analysis. Research members then developed a codebook where emerging themes were noted. Two research team members double coded both transcripts (K = 0.92). Results: Survivors (n=16, 50% female, 38% adult) were a median age 16.3y (IQR: 7.3,20.5) with a median age of CP diagnosis of 7.7y (IQR: 4.8,11.9). Hypothalamic involvement was present in 83% of patients. 40% of participants self-reported having obesity. Most study participants who completed physical activity questionnaires were not involved in organized sports (71%) and reported weekday non-school or work screen time use of 3 hours daily (IQR: 2,6). Key barriers to exercise included psycho-social factors (e.g., embarrassment), scheduling difficulties, and symptoms of CP/treatment side effects (e.g., heat intolerance). Many parents reported their children had greater than typical anxiety (median PROMIS T-score 56.6, IQR: 55,64), depression (median PROMIS T-score 56.1, IQR: 49.4,61.7), and impaired peer relationships (median PROMIS T-score 37.7, IQR, 33.6,42.6). Facilitating factors for exercise included personalized physical therapy and exercise routines and individual activities like swimming. Conclusions: With these insights, we envision designing future trials to test exercise interventions that consider symptoms (fatigue, mobility problems, temperature sensitivity) and social factors (reluctance to exercise with peers, interest in social support) in survivors of childhood craniopharyngioma. Presentation: Saturday, July 12, 2025

Source: Journal of the Endocrine Society

DOI: 10.1210/jendso/bvaf149.1588