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Cited by 28Pituitary Gland Disorders and TreatmentsCancer survivorship and careNursing care and research

Caregiver burden and its relationship to health-related quality of life in craniopharyngioma survivors

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Kayadjanian, Nathalie, Hsu, Eugenie A, Wood, Amy M, Carson, Dean S·2023·The Journal of Clinical Endocrinology & Metabolism
DOI 10.1210/clinem/dgad488PMC PMC10735386
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Abstract

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.

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  • Hypothalamic syndrome represents a substantial burden for patients and families.

    “Hypothalamic syndrome represents a substantial burden for patients and families (5-8), and correspondingly, poses a considerable challenge to clinicians.”

    From Approach to the patient with acquired hypothalamic syndrome (2026) · cites this paper as [8]

    The Discussion reports that symptoms of hypothalamic dysfunction in craniopharyngioma survivors were linked to high caregiver burden and negatively affected survivors’ quality of life. This supports a substantial burden for those patients and their families, but the paper studies craniopharyngioma survivors rather than hypothalamic syndrome across patient populations. (LLM, conf=0.82)

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Cited by

Sorted by citations

Authors
Kayadjanian, N., Hsu, E. A., Wood, A. M., & Carson, D. S.
Affiliations
Raymond A. Wood Foundation , Ocean City, MD 21842 , USA
Corresponding author
  • Kayadjanian, Nathalie
  • Hsu, Eugenie A
ORCID
Venue
The Journal of Clinical Endocrinology & Metabolism
Publisher
The Endocrine Society
Published
2023-08-19
Volume
109
Issue
1
Pages
e76-e87
ISSN
  • 0021-972X (ISSN-L)
  • 1945-7197
DOI
10.1210/clinem/dgad488
PMC
PMC10735386
OpenAlex
W4385999328
Cited by
28
References
2
Citations by year
2026: 12 · 2025: 10 · 2024: 3 · 2023: 3
FWCI
5.74
Type
journal article
Language
en
Open access
Licence
Locations
  • The Journal of Clinical Endocrinology & Metabolism (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Pituitary Gland Disorders and Treatments
  • Health Sciences › Medicine › Oncology › Cancer survivorship and care
  • Health Sciences › Health Professions › Pharmacy › Nursing care and research
Keywords
craniopharyngioma, caregiver burden, health-related quality of life, childhood cancer survivors, hyperphagia, hypothalamic dysfunction, obesity, hypopituitarism, Zarit Burden Interview, PedsQL, comorbidities
MeSH terms
Caregiver Burden, Child, Craniopharyngioma, Humans, Hyperphagia, Neoplasm Recurrence, Local, Obesity, Pituitary Neoplasms, Quality of Life, Survivors

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