{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,4]],"date-time":"2026-09-04T06:51:21Z","timestamp":1788504681843,"version":"build-2803163510"},"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>Objective<\/jats:title>\n<jats:p>To describe the treatment and long-term outcomes of patients with acromegaly from all healthcare regions in Sweden.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Design and methods<\/jats:title>\n<jats:p>Analysis of prospectively reported data from the Swedish Pituitary Register of 698 patients (51% females) with acromegaly diagnosed from 1991 to 2011. The latest clinical follow-up date was December 2012, while mortality data were collected for 28.5 years until June 2019.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Results<\/jats:title>\n<jats:p>The annual incidence was 3.7\/million; 71% of patients had a macroadenoma, 18% had visual field defects, and 25% had at least one pituitary hormone deficiency. Eighty-two percent had pituitary surgery, 10% radiotherapy, and 39% medical treatment. At the 5- and 10-year follow-ups, insulin-like growth factor 1 levels were within the reference range in 69 and 78% of patients, respectively. In linear regression, the proportion of patients with biochemical control including adjuvant therapy at 10 years follow-up increased over time by 1.23% per year. The standardized mortality ratio (SMR) (95% CI) for all patients was 1.29 (1.11\u20131.49). For patients with biochemical control at the latest follow-up, SMR was not increased, neither among patients diagnosed between 1991 and 2000, SMR: 1.06 (0.85\u20131.33) nor between 2001 and2011, SMR: 0.87 (0.61\u20131.24). In contrast, non-controlled patients at the latest follow-up from both decades had elevated SMR, 1.90 (1.33\u20132.72) and 1.98 (1.24\u20133.14), respectively.<\/jats:p>\n<\/jats:sec>\n<jats:sec>\n<jats:title>Conclusions<\/jats:title>\n<jats:p>The proportion of patients with biochemical control increased over time. Patients with biochemically controlled acromegaly have normal life expectancy, while non-controlled patients still have increased mortality. The high rate of macroadenomas and unchanged age at diagnosis illustrates the need for improvements in the management of patients with acromegaly.<\/jats:p>\n<\/jats:sec>","DOI":"10.1530\/eje-21-0729","type":"journal-article","created":{"date-parts":[[2022,1,10]],"date-time":"2022-01-10T17:55:14Z","timestamp":1641837314000},"page":"329-339","update-policy":"https:\/\/doi.org\/10.1530\/crossmarkpolicy-7","source":"Crossref","is-referenced-by-count":38,"title":["Long-term outcomes of patients with acromegaly: a report from the Swedish Pituitary Register"],"prefix":"10.1093","volume":"186","author":[{"given":"Steinunn","family":"Arnard\u00f3ttir","sequence":"first","affiliation":[{"name":"1Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University, Uppsala, Sweden"},{"name":"2Department of Endocrinology and Diabetes, Uppsala University Hospital, Uppsala, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jacob","family":"J\u00e4r\u00e5s","sequence":"additional","affiliation":[{"name":"3Regional Cancer Center (RCC) Stockholm Gotland, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Pia","family":"Burman","sequence":"additional","affiliation":[{"name":"4Department of Endocrinology, Sk\u00e5nes University Hospital, University of Lund, Malm\u00f6, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2488-0375","authenticated-orcid":true,"given":"Katarina","family":"Berinder","sequence":"additional","affiliation":[{"name":"5Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden"},{"name":"6Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Per","family":"Dahlqvist","sequence":"additional","affiliation":[{"name":"7Department of Public Health and Clinical Medicine, Ume\u00e5 University, Ume\u00e5, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eva Marie","family":"Erfurth","sequence":"additional","affiliation":[{"name":"4Department of Endocrinology, Sk\u00e5nes University Hospital, University of Lund, Malm\u00f6, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Charlotte","family":"H\u00f6ybye","sequence":"additional","affiliation":[{"name":"5Department of Molecular Medicine and Surgery, Karolinska Institute, Stockholm, Sweden"},{"name":"6Department of Endocrinology, Karolinska University Hospital, Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karin","family":"Larsson","sequence":"additional","affiliation":[{"name":"1Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University, Uppsala, Sweden"},{"name":"2Department of Endocrinology and Diabetes, Uppsala University Hospital, Uppsala, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Oskar","family":"Ragnarsson","sequence":"additional","affiliation":[{"name":"8Department of Internal Medicine and Clinical Nutrition, Institute of Medicine at Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden"},{"name":"9Department of Endocrinology, Sahlgrenska University Hospital, Gothenburg, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8732-7361","authenticated-orcid":true,"given":"Bertil","family":"Ekman","sequence":"additional","affiliation":[{"name":"10Department of Endocrinology in Link\u00f6ping, Department of Internal Medicine in Norrk\u00f6ping, Department of Health, Medicine and Caring Sciences, Link\u00f6ping University, Link\u00f6ping, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4514-5193","authenticated-orcid":true,"given":"Britt","family":"Ed\u00e9n Engstr\u00f6m","sequence":"additional","affiliation":[{"name":"1Department of Medical Sciences, Endocrinology and Mineral Metabolism, Uppsala University, Uppsala, Sweden"},{"name":"2Department of Endocrinology and Diabetes, Uppsala University Hospital, Uppsala, Sweden"}],"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-21-0729.xml","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/eje.bioscientifica.com\/downloadpdf\/journals\/eje\/186\/3\/EJE-21-0729.xml","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,2,14]],"date-time":"2023-02-14T16:17:04Z","timestamp":1676391424000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/ejendo\/article\/186\/3\/329\/6954301"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,3,1]]},"references-count":0,"journal-issue":{"issue":"3"},"URL":"https:\/\/doi.org\/10.1530\/eje-21-0729","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]]}}}