ORIGINAL RESEARCH article
Front. Endocrinol.
Sec. Pituitary Endocrinology
Disease Burden, Treatment Experiences and Preferences in Patients with Acromegaly: A Qualitative Study
Provisionally accepted
- 1Debiopharm International SA, Lausanne, Switzerland
- 2Erasmus Universiteit Rotterdam Erasmus School of Health Policy and Management, Rotterdam, Netherlands
- 3ICON plc, Insights, Evidence and Value,, Reading, United Kingdom
- 4ICON plc, Insights, Evidence and Value, Milan, Italy
- 5ICON plc, Insights, Evidence and Value, Reading, United Kingdom
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Purpose: Acromegaly is a rare disease with limited treatment options. Understanding treatment burden and patient preferences is important for evaluating new treatments and optimizing adherence. Methods: Patients with acromegaly (≥18 years) from the United States (US) participated in qualitative semi-structured interviews to explore: 1) the impact of acromegaly on quality of life, 2) patients' experiences with current treatment, 3) preferences for new treatments. Results: Fifteen US patients with acromegaly participated, reporting a range of symptoms; physical changes/swelling, fatigue/tiredness and excessive sweating. Frequently reported impacts included limited socializing (n = 6), anxiety (n = 4), embarrassment due to sweating/odor (n = 4) and clothing adaptations due to swelling (n = 4). Frequently reported impacts associated with monthly injectable treatment included unpleasantness of injections/blood tests (n = 6), clinic waiting time (n = 5), travelling to the clinic (n = 3), and treatment frequency (n = 3). Over half of patients preferred daily oral treatment options (n = 8, 53.3%). When asked about preference around hypothetical treatment frequency, 66.760.0% (n=109) preferred a hypothetical 3-monthly injection compared to a monthly injection if it was as efficacious as the monthly injection or recommended by their doctor. Conclusion: Patients experience a wide range of symptoms and impacts, with a high burden of treatment associated with monthly injections. Patients demonstrated preferences for less frequent treatments, with a preference for reducing their current monthly injections to three or six monthly. When considering new treatments, the efficacy and safety profile were of most importance to patients with acromegaly. Word count = 249250 (limit 250)
Keywords: Acromegaly, disease burden, Somatostatins, treatment burden, Treatment experience, treatment preference
Received: 27 Oct 2025; Accepted: 06 Feb 2026.
Copyright: © 2026 Quinn, De Palma, McKeown, Adiutori, E. Kosmas and Petit. 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: Isabelle Petit
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.