Hyperphagia and Obesity

The physical and emotional burden of hyperphagia and obesity

Acquired HO carries significant, long-term burden for people living with hypothalamic injury1,2

Accelerated, sustained weight gain and hyperphagia are two key symptoms that distinguish acquired hypothalamic obesity (HO) from more general forms of obesity.3–6
Family dinner scene. Image of brain that reads: MORE FOOD NOW. Actor portrayals.
Actor portrayals
Acquired HO can result in:
Body icon

Physical burden2,7

Significant burden on patients’ and caregivers' day-to-day lives:

  • Hyperphagia
  • Chronic fatigue
  • Decreased physical activity
  • Weight gain, even in the absence of increased caloric intake
Brain icon

Emotional burden2,7

Distressing emotional and social challenges for patients:

  • Frustration due to difficulty losing weight
  • Poor body image perceptions
  • Fewer positive social interactions
  • Negative impact on mental health

Burden of hyperphagia

Hyperphagia is a chronic pathological condition characterized by insatiable hunger, impaired satiety, and persistent abnormal food-seeking behaviors. It is differentiated from other hunger associated with overeating by its severity and persistence.8

Hyperphagia contributes significantly to patient and caregiver burden in acquired HO2,9

Mean Burden Scores (ZBI) Reported by Caregivers of Craniopharyngioma Patients7,*

30.3

For Caregivers of Patients without hyperphagia (SD: 16.7, n=38)

41.1

For Caregivers of Patients with hyperphagia (SD: 12.8, n=44)

For reference, ZBI scores of
23.7 for cancer caregivers and 36.8 for Alzheimer's disease
caregivers have been reported10

23.7

36.8

ZBI score

*Based on 82 self-identified caregivers of hypothalamic-pituitary brain tumor survivors responding in an online survey to the Zarit Burden Interview (ZBI), which assesses the perceived burden experienced by caregivers of individuals with chronic illnesses or disabilities; a higher score indicates a greater level of caregiver burden.7

Visual graphic showing 70% of a circle filled
Around 70% of patients with acquired HO experience hyperphagia, though the presentation of symptoms and behaviors can vary in severity.7,11
MORE FOOD NOW brain image
Food ruled my life and still does to a certain degree…it’s a lot of grief and struggle in my everyday life.”

– Individual living with acquired HO

Burden of obesity

Acquired HO is a major risk factor for related morbidity and mortality1,12

Long-term Effects of Obesity-related Sequelae in Craniopharyngioma Survivors13-15

52%

Metabolic dysfunction-associated fatty liver disease

46%

Sleep apnea

43%

Dyslipidemia

40%

Hypertension

34%

Glycemic disturbance

22%

Cardiovascular disease

References
  1. Bereket A. Postoperative and long-term endocrinologic complications of craniopharyngioma. Horm Res Paediatr. 2020;93(9-10):497-509. doi:10.1159/000515347
  2. Craven M, Crowley JH, Chiang L, et al. A survey of patient-relevant outcomes in pediatric craniopharyngioma: focus on hypothalamic obesity. Front Endocrinol (Lausanne). 2022;13:876770. Published May 9, 2022. doi:10.3389/fendo.2022.876770
  3. Abuzzahab MJ, Roth CL, Shoemaker AH. Hypothalamic obesity: prologue and promise. Horm Res Paediatr. 2019;91(2):128-136. doi:10.1159/000496564
  4. Roth CL. Hypothalamic obesity in patients with craniopharyngioma: profound changes of several weight regulatory circuits. Front Endocrinol (Lausanne). 2011;2:49. doi:10.3389/fendo.2011.00049
  5. Roth CL, Enriori PJ, Gebhardt U, et al. Changes of peripheral alpha-melanocyte-stimulating hormone in childhood obesity. Metabolism. 2010;59(2):186-194. doi:10.1016/j.metabol.2009.06.031
  6. Roth CL, Gebhardt U, Müller HL. Appetite-regulating hormone changes in patients with craniopharyngioma. Obesity (Silver Spring). 2011;19(1):36-42. doi:10.1038/oby.2010.80
  7. Kayadjanian N, Hsu EA, Wood AM, Carson DS. Caregiver burden and its relationship to health-related quality of life in craniopharyngioma survivors. J Clin Endocrinol Metab. 2023;109(1):e76-e87. doi:10.1210/clinem/dgad488
  8. Heymsfield SB, Clément K, Dubern B, et al. Defining hyperphagia for improved diagnosis and management of MC4R pathway-associated disease: a roundtable summary. Curr Obes Rep. 2025;14(1):13. Published 2025 Jan 25. doi:10.1007/s13679-024-00601-z
  9. van Santen HM, van Schaik J, van Roessel IMAA, Beckhaus J, Boekhoff S, Müller HL. Diagnostic criteria for the hypothalamic syndrome in childhood. Eur J Endocrinol. 2023;188(2):lvad009. doi:10.1093/ejendo/lvad009
  10. Demirbas M, Hahn-Pedersen JH, Jørgensen HL. Comparison between burden of care partners of individuals with Alzheimer's disease versus individuals with other chronic diseases. Neurol Ther. 2023;12(4):1051-1068. doi:10.1007/s40120-023-00493-6
  11. Roth CL, Zenno A. Treatment of hypothalamic obesity in people with hypothalamic injury: new drugs are on the horizon. Front Endocrinol (Lausanne). 2023 Sep 13;14:1256514. doi:10.3389/fendo.2023.1256514
  12. van Iersel L, Brokke KE, Adan RAH, Bulthuis LCM, van den Akker ELT, van Santen HM. Pathophysiology and individualized treatment of hypothalamic obesity following craniopharyngioma and other suprasellar tumors: a systematic review. Endocr Rev. 2019;40(1):193-235. doi:10.1210/er.2018-00017
  13. Dogra P, Bedatsova L, Van Gompel JJ, Giannini C, Donegan DM, Erickson D. Long-term outcomes in patients with adult-onset craniopharyngioma. Endocrine. 2022;78(1):123-134. doi:10.1007/s12020-022-03134-4
  14. Crowley RK, Woods C, Fleming M, et al. Somnolence in adult craniopharyngioma patients is a common, heterogeneous condition that is potentially treatable. Clin Endocrinol (Oxf). 2011;74(6):750-755. doi:10.1111/j.1365-2265.2011.03993.x
  15. Pereira AM, Schmid EM, Schutte PJ, et al. High prevalence of long-term cardiovascular, neurological and psychosocial morbidity after treatment for craniopharyngioma. Clin Endocrinol (Oxf). 2005;62(2):197-204. doi:10.1111/j.1365-2265.2004.02196.x