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Cited by 19Pituitary Gland Disorders and TreatmentsGrowth Hormone and Insulin-like Growth FactorsHypothalamic control of reproductive hormones

Acquired hypothalamic dysfunction in childhood: ‘what do patients need?’ - an endo-ERN survey

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van Roessel, I M A A, de Graaf, J P, Biermasz, N R, Charmandari, E, van Santen, H M·2023·Endocrine Connections
DOI 10.1530/ec-23-0147PMC PMC10503223
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Abstract

Objective: Hypothalamic dysfunction is a rare condition and can be encountered in patients who have been diagnosed or treated for a suprasellar brain tumor. Due to its rarity, the signs and symptoms of hypothalamic dysfunction may be difficult to recognize, leading to delayed diagnosis of the suprasellar brain tumor or to difficulties in finding the health-care expertise for hypothalamic dysfunction after tumor treatment. To improve the care and outcome of patients with acquired hypothalamic dysfunction, professionals are required to understand the patient’s needs. Design: A worldwide online survey was distributed from April 2022 to October 2022 to patients with childhood-onset hypothalamic dysfunction (as reported by the patient) following a brain tumor. Methods: Patients were notified about the survey through patient advocacy groups, the SIOPe craniopharyngioma working group and the Endo-ERN platform. Results: In total, 353 patients with hypothalamic dysfunction following craniopharyngioma (82.2%), low-grade glioma (3.1%) or a pituitary tumor (8.2%) or caregivers responded to the survey. Sixty-two percent had panhypopituitarism. Obesity (50.7%) and fatigue (48.2%) were considered the most important health problems. Unmet needs were reported for help with diet, exercise and psychosocial issues. Patients’ suggestions for future research include new treatments for hypothalamic obesity and alternative ways for hormone administration. Conclusions: According to the patient’s perspective, care for acquired hypothalamic dysfunction can be improved if delivered by experts with a holistic view of the patient in a multidisciplinary setting with a focus on quality of life. Future care and research on hypothalamic dysfunction must integrate the patients’ unmet needs. Significance statement: Patients with hypothalamic dysfunction may experience a variety of symptoms, which are not always adequately recognized or addressed. In previous papers, the perspective of caregivers of children with craniopharyngioma has been reported (Klages et al. 2022, Craven et al. 2022). Now we address the patients’ perspective on acquired hypothalamic dysfunction using an Endo-ERN global survey. According to the patients’ perspective, care can be improved, with needs for improvement in the domains of obesity, fatigue and lifestyle. Research may focus on ways to improve hypothalamic obesity and alternative ways for hormone administration. Ideally, care should be delivered by doctors who have a holistic view of the patient in a multidisciplinary expert team. The results of this study can be used to formulate best practices for clinical care and to design future research proposals.

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  • In the previously cited patient survey, 25.2% of respondents felt they had not received adequate nutritional advice when attempting to lose weight.

    “In the previously cited patient survey, 25.2% of respondents felt they had not received adequate nutritional advice when attempting to lose weight (7).”

    From Approach to the patient with acquired hypothalamic syndrome (2026) · cites this paper as [7]

    The Results section (Unmet needs and rating of current care for hypothalamic dysfunction) reports that 25.2% of patients identified dietary help as an unmet need. It does not say those respondents were attempting to lose weight or that they had received inadequate nutritional advice; a separate 23.8% rated their dietitian’s support as insufficient. (LLM, conf=0.88)

    Experimental — accuracy not yet measured

  • 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 [7]

  • In one survey of 353 individuals with acquired hypothalamic dysfunction, obesity was the most frequently reported health problem, affecting 50.7%.

    “In one survey of 353 individuals with acquired hypothalamic dysfunction, obesity was the most frequently reported health problem, affecting 50.7%”

    From Approach to the patient with acquired hypothalamic syndrome (2026) · cites this paper as [7]

  • In the same survey, fatigue was reported by 48.2%.

    “followed by fatigue, reported by 48.2% (7)”

    From Approach to the patient with acquired hypothalamic syndrome (2026) · cites this paper as [7]

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Cited by

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Authors
van Roessel, I. M. A. A., de Graaf, J. P., Biermasz, N. R., Charmandari, E., & van Santen, H. M.
Affiliations
  • Department of Pediatric Endocrinology, Wilhelmina Children’s Hospital, University Medical Center Utrecht, Utrecht, The Netherlands
  • Dutch Pituitary Foundation, Nijkerk, The Netherlands
  • Leiden University Medical Center (NL)
  • National and Kapodistrian University of Athens (GR)
ORCID
Venue
Endocrine Connections
Publisher
Bioscientifica
Published
2023-08-02
Volume
12
Issue
10
ISSN
2049-3614 (ISSN-L)
DOI
10.1530/ec-23-0147
PMC
PMC10503223
OpenAlex
W4385480042
Cited by
19
References
2
Citations by year
2026: 7 · 2025: 9 · 2024: 2 · 2023: 1
FWCI
3.90
Type
journal article
Language
en
Open access
Licence
Locations
  • Endocrine Connections (publishedVersion, cc-by-nc-nd)
  • PubMed Central (publishedVersion, cc-by-nc-nd)
  • PubMed (publishedVersion)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
  • Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
Topics
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Pituitary Gland Disorders and Treatments
  • Health Sciences › Medicine › Endocrinology, Diabetes and Metabolism › Growth Hormone and Insulin-like Growth Factors
  • Health Sciences › Medicine › Reproductive Medicine › Hypothalamic control of reproductive hormones
Keywords
craniopharyngioma, pituitary tumors, low-grade glioma, panhypopituitarism, hypothalamic obesity, fatigue, patient needs, unmet needs, quality of life, multidisciplinary care, hormone administration, patient perspectives

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