{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,5]],"date-time":"2026-06-05T03:08:56Z","timestamp":1780628936496,"version":"3.54.1"},"reference-count":0,"publisher":"Oxford University Press (OUP)","issue":"3","content-domain":{"domain":["eje.bioscientifica.com"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2022,3,1]]},"abstract":"<jats:sec>\n<jats:title>Objectives<\/jats:title>\n<jats:p>To assess the impact of virtual education programming for patients with acromegaly.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Design<\/jats:title>\n<jats:p>We conducted a mixed methods study to evaluate patient attitudes, examine if patient-centered educational forums change these attitudes, and determine the role of virtual education as a means to learn about patients\u2019 unmet needs, self-reported outcomes, and educational priorities.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Methods<\/jats:title>\n<jats:p>The study included 653 total virtual program registrants. Of these, 78 patients with acromegaly were included in the analysis. The programs consisted of patient-centered livestream education by a multidisciplinary team of pituitary experts and patient presenters. Multiple-choice questions were used to assess attitudes before and after the event, and short answer surveys were used to collect care goals and unmet needs related to treatment.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>Attendance included participants from 37 countries. The number of patients who responded that they had no hope for improvement, had no choice in their treatment, and felt alone living with acromegaly each decreased significantly pre- to post-event (<jats:italic>P<\/jats:italic>\u2009 &lt; 0.05). The number of patients who felt anxious about their acromegaly diagnosis remained unchanged. \u2018Quality of life\/mental health\u2019 was the most common personal care goals concern followed by \u2018medical therapies\/tumor control.\u2019 Perceived acromegaly unmet needs were evenly distributed, with five of six categories reported by over 20% of patients.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Conclusion<\/jats:title>\n<jats:p>Our findings indicate that virtual education may have a significant positive effect on acromegaly patients\u2019 perceptions of their disease. The lessons learned from these virtual programs may be used to inform future virtual education programming for acromegaly and other rare diseases.<\/jats:p>\n<\/jats:sec>","DOI":"10.1530\/eje-21-1071","type":"journal-article","created":{"date-parts":[[2022,2,4]],"date-time":"2022-02-04T11:51:26Z","timestamp":1643975486000},"page":"341-349","update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-7","source":"Crossref","is-referenced-by-count":9,"title":["Virtual education programming for patients with acromegaly: a pilot study"],"prefix":"10.1093","volume":"186","author":[{"given":"Eliza B","family":"Geer","sequence":"first","affiliation":[{"name":"1Multidisciplinary Pituitary & Skull Base Tumor Center, Departments of Medicine and Neurosurgery, Memorial Sloan Kettering Cancer Center, New York, New York, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"John L","family":"Kilgallon","sequence":"additional","affiliation":[{"name":"2Neuroendocrine Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen J P","family":"Liebert","sequence":"additional","affiliation":[{"name":"2Neuroendocrine Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6750-644X","authenticated-orcid":true,"given":"Allison","family":"Kimball","sequence":"additional","affiliation":[{"name":"2Neuroendocrine Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5708-5231","authenticated-orcid":true,"given":"Lisa B","family":"Nachtigall","sequence":"additional","affiliation":[{"name":"2Neuroendocrine Unit, Massachusetts General Hospital, Harvard Medical School, Boston, Massachusetts, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","container-title":["European Journal of Endocrinology"],"original-title":[],"link":[{"URL":"https:\/\/eje.bioscientifica.com\/view\/journals\/eje\/186\/3\/EJE-21-1071.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/eje.bioscientifica.com\/downloadpdf\/journals\/eje\/186\/3\/EJE-21-1071.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,2,14]],"date-time":"2023-02-14T16:17:29Z","timestamp":1676391449000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ejendo\/article\/186\/3\/341\/6954251"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,3,1]]},"references-count":0,"journal-issue":{"issue":"3"},"URL":"https:\/\/doi.org\/10.1530\/eje-21-1071","relation":{},"ISSN":["0804-4643","1479-683X"],"issn-type":[{"value":"0804-4643","type":"print"},{"value":"1479-683X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,3,1]]}}}