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Cited by 21Pituitary Gland Disorders and TreatmentsRegulation of Appetite and ObesityObesity, Physical Activity, Diet

A Survey of Patient-Relevant Outcomes in Pediatric Craniopharyngioma: Focus on Hypothalamic Obesity

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Craven, Meghan, Crowley, Julia H., Chiang, Lucas, Kline, Cassie, Malbari, Fatema, Hocking, Matthew C., McCormack, Shana E.·2022·Frontiers in Endocrinology
DOI 10.3389/fendo.2022.876770PMC PMC9124861
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Abstract

Context: Individuals treated for pediatric craniopharyngioma, a rare, grade 1 brain tumor, frequently develop hypothalamic obesity, a complication often recalcitrant to intervention. Although hypothalamic obesity is known to adversely impact quality of life, less is known about how caregivers and patients experience this condition. Objective: Our goal was to examine the approaches that families take towards weight management and the impact on social function in individuals with craniopharyngioma and obesity. Individuals with craniopharyngioma without obesity were included as a comparison. Subjects and Methods: Adult caregivers of children <18y with craniopharyngioma completed a web-based survey posted by a patient advocacy organization between February and July 2020. Questions related to the child's diagnosis, medications, lifestyle modifications, and social function along with research priorities. Descriptive statistics were generated. Linear regression was used to assess the independent effects of obesity and other covariates on social function. Results: Of 106 respondents, 60 (57%) reported their child had obesity at the time of survey completion. In contrast, only 6 (5.7%) had obesity prior to craniopharyngioma diagnosis. A majority (92%) of those with obesity had tried limiting calories or carbohydrates; 31% and 69% found these helpful, respectively. Thirty-eight percent had tried weight loss medications (stimulants, metformin, GLP1R-agonists, and topiramate) and 48% found at least one helpful. Both stimulant and anti-depressant use were reported more frequently with obesity. An index (T-score) reflecting social function was lower in the cohort than a population reference, 41 (SD 11) vs. 50 (SD 10), p<0.001. In a linear model, both older age and obesity were independently associated with greater social impairment. Ninety-four percent of respondents caring for a child with obesity (and 79% of all respondents) identified "improving treatments and prevention for hypothalamic obesity" as a key research priority. Conclusions: Only a minority of individuals with hypothalamic obesity had trialed medication, even though many reported that lifestyle modification was inadequate. Furthermore, social function was significantly impaired overall in survivors compared to a reference cohort, and even more so in individuals with obesity. These findings highlight the opportunity to improve social functioning as an additional potential benefit of improved treatments for hypothalamic obesity.

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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 [5]

    The Introduction describes impaired quality of life and challenges for affected individuals and families, and the Discussion reports reduced social functioning and caregiver concerns. These passages concern hypothalamic obesity and other sequelae in survivors of pediatric craniopharyngioma; they do not establish the burden of hypothalamic syndrome generally. No page numbers are available in our copy. (LLM, conf=0.82)

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  • Peer relationships pose a challenge for many individuals with hypothalamic syndrome; those with obesity fare even worse than those without, and more than is accounted for by weight gain alone.

    “Peer relationships also pose a challenge for many individuals with hypothalamic syndrome; those with obesity fare even worse than those without, and more than is accounted for by weight gain alone (5).”

    From Approach to the patient with acquired hypothalamic syndrome (2026) · cites this paper as [5]

    The Discussion (page unavailable) reports impaired peer relationships in youth with craniopharyngioma, worse scores among those with obesity, and scores below those reported for children with obesity without craniopharyngioma. It proposes additive effects of craniopharyngioma and obesity, but does not establish that the difference exceeds what weight gain alone accounts for. The study also does not establish the finding for individuals with hypothalamic syndrome generally. (LLM, conf=0.83)

    Experimental — accuracy not yet measured

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Cited by

Sorted by citations

Authors
Craven, M., Crowley, J. H., Chiang, L., Kline, C., Malbari, F., Hocking, M. C., & McCormack, S. E.
Affiliations
  • Children's Hospital of Philadelphia (US)
  • Texas Children's Hospital (US)
Corresponding author
McCormack, Shana E.
ORCID
Venue
Frontiers in Endocrinology
Publisher
Frontiers Media SA
Published
2022-05-09
Volume
13
Pages
876770-876770
ISSN
1664-2392 (ISSN-L)
DOI
10.3389/fendo.2022.876770
PMC
PMC9124861
OpenAlex
W4229370219
Cited by
21
References
6
Citations by year
2026: 10 · 2025: 4 · 2024: 3 · 2023: 4
FWCI
2.04
Type
journal article
Language
en
Open access
Licence
Locations
  • Frontiers in Endocrinology (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
Funders
Children's Hospital of Philadelphia
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Pituitary Gland Disorders and Treatments
  • Life Sciences › Neuroscience › Endocrine and Autonomic Systems › Regulation of Appetite and Obesity
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Obesity, Physical Activity, Diet
Keywords
pediatric craniopharyngioma, hypothalamic obesity, weight management, social function, caregivers, anti-obesity drugs, lifestyle modification, quality of life, research priorities, childhood cancer survivors
MeSH terms
Adult, Child, Craniopharyngioma, Humans, Obesity, Pituitary Neoplasms, Quality of Life, Surveys and Questionnaires, Treatment Outcome

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