ArticleThe Journal of clinical endocrinology and metabolism2023
Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors.
Article in The Journal of clinical endocrinology and metabolism, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 23 papers.
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Who cites it
23 citing papers in PubMed, 20 citations in OpenAlex.
- Quality of life improvements with setmelanotide treatment in acquired hypothalamic obesity: TRANSCEND trial interview results from US participants.Frontiers in behavioral neuroscience · 2026Trial
- Approach to the patient with acquired hypothalamic syndrome.The Journal of clinical endocrinology and metabolism · 2026Review
- Current Approaches and Therapeutic Strategies for Hypothalamic Syndrome in Patients with Childhood-onset Craniopharyngioma.Journal of clinical research in pediatric endocrinology · 2026Review
- Coping strategies of parents of children with chronic diseases and their relationship with caregiving burden.BMC pediatrics · 2026Article
- Review
- Hyperphagia in craniopharyngioma- a real-world study from the international hypothalamic-pituitary brain tumors patient registry.Scientific reports · 2026Article
- Treatment Priorities in Craniopharyngioma: Perspectives of Survivors and Caregivers.Biomedicines · 2026Article
- Diagnostic criteria for acquired hypothalamic obesity - international expert guidance document.Endocrine journal · 2026Review
- Quality of life, morbidity, mortality, and long-term prognosis after craniopharyngioma.Frontiers in endocrinology · 2026Review
- Endocrine and metabolic consequences of childhood-onset craniopharyngioma during the transition age: A literature review by the TALENT study group.Reviews in endocrine & metabolic disorders · 2025Review
- Economics of hypothalamic obesity in patients with craniopharyngioma and other rare sellar/suprasellar tumors.The European journal of health economics : HEPAC : health economics in prevention and care · 2025Article
- Management of Acquired Hypothalamic Dysfunction and the Hypothalamic Syndrome; It Is More Than Obesity.Endocrine reviews · 2025Review
- IMPROVE 2023: The 2nd International Meeting on Pathway-Related Obesity: Vision & Evidence.Clinical obesity · 2025Article
- Sleep Disorders, Dysregulation of Circadian Rhythms, and Fatigue After Craniopharyngioma-A Narrative Review.Biomedicines · 2025Review
- Management of Acquired Hypothalamic Obesity After Childhood-Onset Craniopharyngioma-A Narrative Review.Biomedicines · 2025Review
- BMI trajectories in the first 3 months after childhood craniopharyngioma resection: a plea for early management of BMI changes.Endocrine connections · 2025Article
- Daytime sleepiness and health-related quality of life in patients with childhood-onset craniopharyngioma.Scientific reports · 2025Article
- Treatment of patients with tumor/treatment-related hypothalamic obesity in the first two years following surgical treatment or radiotherapy.Scientific reports · 2025Article
- Risk Factors for MAFLD and Advanced Liver Fibrosis in Adult-Onset Craniopharyngioma Patients: A Cross-Sectional Study.Diabetes, metabolic syndrome and obesity : targets and therapy · 2025Article
- Inflammatory mediator contributes to leptin resistance and obesity in craniopharyngioma.FASEB journal : official publication of the Federation of American Societies for Experimental Biology · 2024Article
Corrections and comments
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Authors and funding
4 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
contextCraniopharyngioma (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.
objectiveTo measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP.
methodsEighty-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).
resultsCaregivers 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).
conclusionSurvivor 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.