{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T06:40:38Z","timestamp":1772692838541,"version":"3.50.1"},"reference-count":28,"publisher":"Frontiers Media SA","license":[{"start":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T00:00:00Z","timestamp":1772668800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["frontiersin.org"],"crossmark-restriction":true},"short-container-title":["Front. Endocrinol."],"abstract":"<jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>Acromegaly is a rare disease with limited treatment options. Understanding treatment burden and patient preferences is important for evaluating new treatments and optimizing adherence.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Patients with acromegaly (\u226518 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\u2019 experiences with current treatment, 3) preferences for new treatments.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>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, 60.0% (n=9) 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.3389\/fendo.2026.1733510","type":"journal-article","created":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T05:25:43Z","timestamp":1772688343000},"update-policy":"https:\/\/doi.org\/10.3389\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["Disease burden, treatment experiences and preferences in patients with acromegaly: a qualitative study"],"prefix":"10.3389","volume":"17","author":[{"given":"Jennifer","family":"Quinn","sequence":"first","affiliation":[{"name":"Global Value & Access, Debiopharm International SA","place":["Lausanne, Switzerland"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrea","family":"De Palma","sequence":"additional","affiliation":[{"name":"Erasmus School of Health Policy & Management, Erasmus Rotterdam University","place":["Rotterdam, Netherlands"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rebecca","family":"McKeown","sequence":"additional","affiliation":[{"name":"ICON plc, Insights, Evidence and Value","place":["Reading, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rocco","family":"Adiutori","sequence":"additional","affiliation":[{"name":"Mapi Research Trust","place":["Lyon, France"]},{"name":"ICON plc, Insights, Evidence and Value","place":["Milan, Italy"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Charlotte E.","family":"Kosmas","sequence":"additional","affiliation":[{"name":"ICON plc, Insights, Evidence and Value","place":["Reading, United Kingdom"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Isabelle","family":"Petit","sequence":"additional","affiliation":[{"name":"Global Value & Access, Debiopharm International SA","place":["Lausanne, Switzerland"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1965","published-online":{"date-parts":[[2026,3,5]]},"reference":[{"key":"B1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-8587(22)00244-3","article-title":"Acromegaly: pathogenesis, diagnosis, and management","volume":"10","author":"Fleseriu","year":"2022","journal-title":"Lancet Diabetes Endocrinol"},{"key":"B2","doi-asserted-by":"publisher","DOI":"10.1016\/j.mayocp.2021.11.007","article-title":"Diagnosis and treatment of acromegaly: an update","volume":"97","author":"Ershadinia","year":"2022","journal-title":"Mayo Clinic Proc"},{"key":"B3","doi-asserted-by":"publisher","DOI":"10.1172\/JCI39375","article-title":"Acromegaly pathogenesis and treatment","volume":"119","author":"Melmed","year":"2009","journal-title":"J Clin Invest"},{"key":"B4","doi-asserted-by":"publisher","DOI":"10.1007\/s11102-019-00986-4","article-title":"Development of a novel patient-reported measure for acromegaly: the Acro-TSQ","volume":"22","author":"Fleseriu","year":"2019","journal-title":"Pituitary"},{"key":"B5","doi-asserted-by":"publisher","DOI":"10.1007\/s11102-012-0412-x","article-title":"Acromegalic patients lost to follow-up: a pilot study","volume":"16","author":"Kasuki","year":"2013","journal-title":"Pituitary"},{"key":"B6","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S119570","article-title":"Communication practices and awareness of resources for acromegaly patients among endocrinologists","volume":"10","author":"Polanco-Briceno","year":"2016","journal-title":"Patient Preference Adherence"},{"key":"B7","first-page":"53","article-title":"Patient perspectives on the impact of acromegaly: results from individual and group interviews","volume":"8","author":"Gurel","year":"2014","journal-title":"Patient Preference Adherence"},{"key":"B8","doi-asserted-by":"publisher","DOI":"10.2147\/MDER.S37831","article-title":"Evaluation of long-acting somatostatin analog injection devices by nurses: A quantitative study","volume":"5","author":"Adelman","year":"2012","journal-title":"Med Devices"},{"key":"B9","doi-asserted-by":"publisher","DOI":"10.1530\/EC-20-0335","article-title":"Acromegaly and the information gap: patient perceptions of the journey from primary to tertiary care","volume":"9","author":"Pak","year":"2020","journal-title":"Endocr Connections"},{"key":"B10","doi-asserted-by":"publisher","DOI":"10.1016\/j.ghir.2021.101422","article-title":"Illness-related burden, personal resources and need for support in patients with acromegaly: Results of a focus group analysis","author":"Siegel","year":"2021","journal-title":"Growth Horm Igf Res"},{"key":"B11","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2265.2002.01597.x","article-title":"Acromegaly Quality of Life Questionnaire (ACROQOL) a new health-related quality of life questionnaire for patients with acromegaly: development and psychometric properties","volume":"57","author":"Webb","year":"2002","journal-title":"Clin Endocrinol"},{"key":"B12","doi-asserted-by":"publisher","DOI":"10.1055\/s-2000-8144","article-title":"Emotional disorders in patients with different types of pituitary adenomas and factors affecting the diagnostic process","volume":"108","author":"Flitsch","year":"2000","journal-title":"Exp Clin Endocrinol Diabetes"},{"key":"B13","doi-asserted-by":"publisher","DOI":"10.1530\/EJE-18-0925","article-title":"Patients\u2019 perspectives on acromegaly diagnostic delay: a qualitative study","volume":"180","author":"Sibeoni","year":"2019","journal-title":"Eur J Endocrinol"},{"key":"B14","doi-asserted-by":"publisher","first-page":"86","DOI":"10.1007\/s11102-014-0561-1","article-title":"Towards a better quality of life (QoL) for patients with pituitary diseases: results from a focus group study exploring QoL","volume":"18","author":"Andela","year":"2015","journal-title":"Pituitary"},{"key":"B15","doi-asserted-by":"publisher","DOI":"10.1007\/s40618-024-02483-3","article-title":"Anxiety, depression and acromegaly: a systematic review","volume":"48","author":"Silvestro","year":"2025","journal-title":"J Endocrinol Invest"},{"key":"B16","doi-asserted-by":"publisher","first-page":"251","DOI":"10.1186\/s13023-024-03246-2","article-title":"Quality of life in patients with acromegaly: a scoping review","volume":"19","author":"Wang","year":"2024","journal-title":"Orphanet J Rare Dis"},{"key":"B17","first-page":"56","article-title":"Content and thematic analysis","volume-title":"Research methods for clinical and health psychology","author":"Joffe","year":"2004"},{"key":"B18","unstructured":"Version 2024. VERBI software\n          \n          2023"},{"key":"B19","unstructured":"Patient-focused drug development: methods to identify what is important to patients\n          \n          2022"},{"key":"B20","doi-asserted-by":"publisher","DOI":"10.1007\/s11102-023-01376-7","article-title":"Acromegaly increases depressive symptoms and reduces quality of life of cohabitants","volume":"27","author":"Uysal","year":"2024","journal-title":"Pituitary"},{"key":"B21","doi-asserted-by":"publisher","DOI":"10.1016\/j.ecl.2022.04.004","article-title":"Evaluating the impact of acromegaly on quality of life","volume":"51","author":"Coopmans","year":"2022","journal-title":"Endocrinol Metab Clin North Am"},{"key":"B22","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1007\/s00520-024-08377-7","article-title":"PREF-NET: a patient preference and experience study of lanreotide autogel administered in the home versus hospital setting among patients with gastroenteropancreatic neuroendocrine tumours in the UK","volume":"32","author":"Khan","year":"2024","journal-title":"Support Care Cancer"},{"key":"B23","doi-asserted-by":"publisher","DOI":"10.1080\/03007995.2024.2314244","article-title":"Preferences for different treatment options among people living with acromegaly in the US","volume":"40","author":"Sisco","year":"2024","journal-title":"Curr Med Res Opin"},{"key":"B24","doi-asserted-by":"publisher","DOI":"10.1200\/JCO.1997.15.1.110","article-title":"Patient preferences for oral versus intravenous palliative chemotherapy","volume":"15","author":"Liu","year":"1997","journal-title":"J Clin Oncol"},{"key":"B25","doi-asserted-by":"publisher","DOI":"10.2147\/PPA.S106629","article-title":"Patient-reported preferences for oral versus intravenous administration for the treatment of cancer: a review of the literature","volume":"10","author":"Eek","year":"2016","journal-title":"Patient Preference Adherence"},{"key":"B26","doi-asserted-by":"publisher","DOI":"10.1007\/s12325-020-01561-1","article-title":"Preference for oral and injectable GLP-1 RA therapy profiles in Japanese patients with type 2 diabetes: A discrete choice experiment","volume":"38","author":"Igarashi","year":"2021","journal-title":"Adv Ther"},{"key":"B27","doi-asserted-by":"publisher","first-page":"A568","DOI":"10.1016\/j.jval.2013.08.1521","article-title":"Patient preference for oral versus injectable and intravenous methods of treatment for rheumatoid arthritis","volume":"16","author":"Barclay","year":"2013","journal-title":"Value Health"},{"key":"B28","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-022-07054-x","article-title":"A qualitative study to understand the experience of somatostatin analog treatments from the perspective of patients with neuroendocrine tumors","volume":"30","author":"Seo","year":"2022","journal-title":"Supportive Care Cancer"}],"container-title":["Frontiers in Endocrinology"],"original-title":[],"link":[{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fendo.2026.1733510\/full","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,3,5]],"date-time":"2026-03-05T05:25:44Z","timestamp":1772688344000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.frontiersin.org\/articles\/10.3389\/fendo.2026.1733510\/full"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,3,5]]},"references-count":28,"alternative-id":["10.3389\/fendo.2026.1733510"],"URL":"https:\/\/doi.org\/10.3389\/fendo.2026.1733510","relation":{},"ISSN":["1664-2392"],"issn-type":[{"value":"1664-2392","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,3,5]]},"article-number":"1733510"}}