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ORIGINAL RESEARCH article

Front. Endocrinol.
Sec. Pituitary Endocrinology
Volume 16 - 2025 | doi: 10.3389/fendo.2025.1516131

Patient Perspectives on Acromegaly Disease Burden: Insights from a Patient-Focused Community Meeting

Provisionally accepted
Shruti N. Shah Shruti N. Shah 1Kevin C.J. Yuen Kevin C.J. Yuen 2Vivien Bonert Vivien Bonert 3Wenyu Huang Wenyu Huang 4Jill Sisco Jill Sisco 5Chrystal Palaty Chrystal Palaty 6Kristen Dancel-Manning Kristen Dancel-Manning 7Nidhi Agrawal Nidhi Agrawal 7*
  • 1 Grossman School of Medicine, New York University, New York, United States
  • 2 Barrow Neurological Institute (BNI), Phoenix, Arizona, United States
  • 3 Cedars Sinai Medical Center, Los Angeles, California, United States
  • 4 Feinberg School of Medicine, Northwestern University, Chicago, Illinois, United States
  • 5 Acromegaly Community, Grove, United States
  • 6 Metaphase Health Research Consulting Inc., Vancouver, Canada
  • 7 Langone Medical Center, New York University, New York City, New York, United States

The final, formatted version of the article will be published soon.

    Objective: A profound mismatch between biological and symptom control in acromegaly creates a high disease burden despite achieving optimal biological control. There is a great need to learn more about the perspectives of patients living with acromegaly. Methods: Acromegaly Community hosted a virtual meeting in January 2021 and prepared a detailed report capturing participants' input on acromegaly symptoms and current and future treatment approaches. The findings of this report are reviewed and summarized in this study. Results: Fatigue/muscle weakness (92%) and joint pain/arthritis (90%) are the two most common and troublesome symptoms reported by meeting participants. Acromegaly negatively impacts all aspects of daily living: social interaction (49%); exercise (42%); sports/recreational activities (39%); household activities (38%); attending school or job (38%); family relationships (33%); and walking (26%). Anxiety/depression is experienced by 75% of respondents. Eighty-three percent of patients underwent pituitary surgery, and over 71% of patients require medical therapy. Patients desire future improvements in medication efficacy, tolerability, and administration; mental health resources for themselves and their families; and other multimodal approaches to address their physical symptoms, specifically hunger, weight gain, muscle weakness, and joint pains. Conclusion: Acromegaly patients experience significant physical and psychological burdens despite biochemical control, highlighting the need for comprehensive and patient-centered care. In particular, the impacts on activities of daily living (ADLs) and heavy psychosocial and socioeconomic burdens are striking. We advocate for periodic screening for impacted ADLs, multidisciplinary teams to proactively address these symptoms, and call for further research on under-evaluated aspects of the disease.

    Keywords: Acromegaly, Pituitary, Patient perspective, Quality of Life, Mental Health

    Received: 23 Oct 2024; Accepted: 07 Jan 2025.

    Copyright: © 2025 Shah, Yuen, Bonert, Huang, Sisco, Palaty, Dancel-Manning and Agrawal. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

    * Correspondence: Nidhi Agrawal, Langone Medical Center, New York University, New York City, 10016, New York, United States

    Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.