SAT-088 Mental Health In Acromegaly: Insights From A North American Survey Of Individuals Living With Acromegaly.

Abstract Disclosure: L. Bulpett: Chiesi Global Rare Diseases. C. Jonas: Chiesi Global Rare Diseases. J. Crompton: Chiesi Global Rare Diseases. R.A. Epstein: Chiesi Global Rare Diseases. C. Bott: Chiesi Global Rare Diseases.. Introduction: Acromegaly is a rare endocrine disorder characterized by distinct physical changes and multiple comorbidities that may progress over time. While physical manifestations are well documented, mental health impacts remain underexplored. A survey-based approach was used to characterize the mental health challenges experienced by individuals living with acromegaly and identify potential support opportunities. Methods: An anonymous 15-question online survey in English and French was disseminated by 3 acromegaly patient advocacy groups in the US and Canada. Eligible respondents included adults (≥18 years) with a self-reported diagnosis of acromegaly. Questions addressed mental health symptoms, including frequency and impact across the acromegaly journey, and current and preferred sources of mental health support. Results: 261 of 358 individuals living with acromegaly responding were eligible and participated in the survey. Most respondents were white (87%), female (82%), and between the age of 46-60 years old (43%). The most constant or frequently reported mental health symptoms included cognitive fatigue (64%), chronic stress (59%), anxiety (59%), low self-esteem (56%), embarrassment (43%), and depression (43%). Self-esteem/body image, sleep/rest, and sexual relationships were the areas of life that mental health challenges had a major or severe impact in the majority of respondents. The diagnostic period was the most mentally challenging stage for individuals living with acromegaly, with 49% of individuals rating their mental health as poor or very poor. However, during post-treatment monitoring and management, only 30% of individuals rated their mental health as good or excellent. 78% of individuals living with acromegaly view mental health as a significant concern, and 91% believe that mental health is equally as important to address in acromegaly care as physical health. Over half of all respondents were not currently receiving mental health support, primarily due to a preference for self-management or a belief that providers may not understand their experience with rare disease. Among individuals who were receiving mental health support, most were self-motivated to do so, and care was often provided by professionals without rare disease expertise. Respondents expressed interest in in-person or virtual counselling and peer-support groups, particularly to improve self-esteem, body image, and overall enjoyment of life. Conclusions: These results add to the growing body of evidence that mental health challenges in individuals living with acromegaly are prevalent but often unaddressed, leading to negative impacts on the quality of life. Access to rare disease-informed mental health support remains an unmet need. Further research on proactive referral to mental health resources and adequate coverage and reimbursement of this support are warranted. Presentation: Saturday, July 12, 2025