Related Experiment Video
Updated: Jul 20, 2025
05:48
The Adventures of Fundi Intervention Based on the Cognitive and Emotional Processing in Attention Deficit Hyperactive Disorder Patients
Published on: June 12, 2020
5.8K
Acquired hypothalamic dysfunction in childhood: 'what do patients need?' - an Endo-ERN survey
I M A A van Roessel1, J P de Graaf2,3,4, N R Biermasz3,4
1Department of Pediatric Endocrinology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Utrecht, The Netherlands.
Endocrine Connections
|August 2, 2023
Summary
Patients with hypothalamic dysfunction after brain tumors report significant unmet needs in managing obesity and fatigue. Improved care requires a multidisciplinary approach focusing on quality of life and integrating patient-reported outcomes.
Area of Science:
- Endocrinology
- Neuro-oncology
- Patient-reported outcomes
Background:
- Hypothalamic dysfunction is a rare complication of suprasellar brain tumors, often leading to delayed diagnosis and treatment challenges.
- Recognizing and managing symptoms like obesity and fatigue is crucial for improving patient outcomes.
- Understanding the patient's perspective is essential for enhancing care for acquired hypothalamic dysfunction.
Purpose of the Study:
- To investigate the patient-reported experiences and unmet needs of individuals with childhood-onset hypothalamic dysfunction following brain tumor treatment.
- To identify areas for improvement in clinical care and future research directions from the patient's viewpoint.
Main Methods:
- A worldwide online survey was conducted from April to October 2022.
- Patients with self-reported hypothalamic dysfunction post-brain tumor diagnosis were recruited through advocacy groups and specialized networks.
- Data from 353 patients were analyzed to understand their health concerns and needs.
Main Results:
- The majority of patients (82.2%) had hypothalamic dysfunction following craniopharyngioma.
- Panhypopituitarism affected 62% of respondents, with obesity (50.7%) and fatigue (48.2%) being the most significant health problems.
- Patients reported unmet needs in diet, exercise, and psychosocial support, and suggested research into hypothalamic obesity treatments and alternative hormone administration.
Conclusions:
- Patient-centered care for hypothalamic dysfunction should be delivered by multidisciplinary expert teams with a holistic approach.
- Future research and clinical practice must address patients' unmet needs, particularly concerning obesity, fatigue, and quality of life.
- Integrating patient perspectives is key to improving care and outcomes for individuals with acquired hypothalamic dysfunction.
