{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,3]],"date-time":"2026-08-03T15:58:33Z","timestamp":1785772713208,"version":"3.56.0"},"reference-count":20,"publisher":"Springer Science and Business Media LLC","issue":"2","license":[{"start":{"date-parts":[[2024,2,5]],"date-time":"2024-02-05T00:00:00Z","timestamp":1707091200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,2,5]],"date-time":"2024-02-05T00:00:00Z","timestamp":1707091200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["P30 CA008748"],"award-info":[{"award-number":["P30 CA008748"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Pituitary"],"published-print":{"date-parts":[[2024,4]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Context<\/jats:title>\n                    <jats:p>Patients with Cushing\u2019s disease (CD) face challenges living with and receiving appropriate care for this rare, chronic condition. Even with successful treatment, many patients experience ongoing symptoms and impaired quality of life (QoL). Different perspectives and expectations between patients and healthcare providers (HCPs) may also impair well-being.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To examine differences in perspectives on living with CD between patients and HCPs, and to compare care goals and unmet needs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>Memorial Sloan Kettering Pituitary Center established an annual pituitary symposium for pituitary patients and HCPs. Through anonymous pre-program surveys distributed at the 2020 and 2022 symposia, patients and HCPs answered questions related to their own sense, or perception of their patients\u2019 sense, of hope, choice, and loneliness in the context of living with CD.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Participants<\/jats:title>\n                    <jats:p>From 655 participants over two educational events, 46 patients with CD and 116 HCPs were included. Median age of both groups was 51\u00a0years. 78.3% of the patients were female vs. 53.0% of the HCPs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>More patients than HCPs reported they had no choices in their treatment (21.7% vs. 0.9%, P\u2009&lt;\u20090.001). More patients reported feeling alone living with CD than HCPs\u2019 perception of such (60.9% vs. 45.5%, P\u2009=\u20090.08). The most common personal care goal concern for patients was \u2018QoL\/mental health,\u2019 vs. \u2018medical therapies\/tumor control\u2019 for HCPs. The most common CD unmet need reported by patients was \u2018education\/awareness\u2019 vs. \u2018medical therapies\/tumor control\u2019 for HCPs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>CD patients experience long term symptoms and impaired QoL which may in part be due to a perception of lack of effective treatment options and little hope for improvement. Communicating experiences and care goals may improve long term outcomes for CD patients.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s11102-024-01381-4","type":"journal-article","created":{"date-parts":[[2024,2,5]],"date-time":"2024-02-05T10:04:52Z","timestamp":1707127492000},"page":"141-150","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Different patient versus provider perspectives on living with Cushing\u2019s disease"],"prefix":"10.1007","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0009-0005-7087-7152","authenticated-orcid":false,"given":"Amanda","family":"Halstrom","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"I.-Hsin","family":"Lin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Andrew","family":"Lin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marc","family":"Cohen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Viviane","family":"Tabar","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3722-1889","authenticated-orcid":false,"given":"Eliza B.","family":"Geer","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,2,5]]},"reference":[{"issue":"9522","key":"1381_CR1","doi-asserted-by":"publisher","first-page":"1605","DOI":"10.1016\/S0140-6736(06)68699-6","volume":"367","author":"J Newell-Price","year":"2006","unstructured":"Newell-Price J, Bertagna X, Grossman AB, Nieman LK (2006) Cushing\u2019s syndrome. Lancet 367(9522):1605\u20131617. https:\/\/doi.org\/10.1016\/S0140-6736(06)68699-6","journal-title":"Lancet"},{"key":"1381_CR2","doi-asserted-by":"publisher","first-page":"9014768","DOI":"10.1155\/2018\/9014768","volume":"2018","author":"I Kreitschmann-Andermahr","year":"2018","unstructured":"Kreitschmann-Andermahr I, Siegel S, Gammel C et al (2018) Support needs of patients with Cushing\u2019s disease and Cushing\u2019s syndrome: results of a survey conducted in Germany and the USA. Int J Endocrinol 2018:9014768. https:\/\/doi.org\/10.1155\/2018\/9014768","journal-title":"Int J Endocrinol"},{"issue":"3","key":"1381_CR3","doi-asserted-by":"publisher","first-page":"311","DOI":"10.1530\/EJE-11-1095","volume":"167","author":"RA Feelders","year":"2012","unstructured":"Feelders RA, Pulgar SJ, Kempel A, Pereira AM (2012) The burden of Cushing\u2019s disease: clinical and health-related quality of life aspects. Eur J Endocrinol 167(3):311\u2013326. https:\/\/doi.org\/10.1530\/EJE-11-1095","journal-title":"Eur J Endocrinol"},{"key":"1381_CR4","doi-asserted-by":"publisher","DOI":"10.1210\/jendso\/bvab061","author":"D Donegan","year":"2021","unstructured":"Donegan D, Gowan T, Gruber R et al (2021) The need for patient-centered education among patients newly diagnosed with a pituitary tumor. J Endocr Soc. https:\/\/doi.org\/10.1210\/jendso\/bvab061","journal-title":"J Endocr Soc"},{"issue":"3","key":"1381_CR5","doi-asserted-by":"publisher","first-page":"553","DOI":"10.1016\/j.ecl.2020.05.010","volume":"49","author":"S Frara","year":"2020","unstructured":"Frara S, Rodriguez-Carnero G, Formenti AM, Martinez-Olmos MA, Giustina A, Casanueva FF (2020) Pituitary tumors centers of excellence. Endocrinol Metab Clin North Am 49(3):553\u2013564. https:\/\/doi.org\/10.1016\/j.ecl.2020.05.010","journal-title":"Endocrinol Metab Clin North Am"},{"issue":"2","key":"1381_CR6","doi-asserted-by":"publisher","first-page":"140","DOI":"10.1007\/s11102-019-01013-2","volume":"23","author":"EB Geer","year":"2020","unstructured":"Geer EB, Sisco J, Adelman DT et al (2020) Observed discordance between outcomes reported by acromegaly patients and their treating endocrinology medical provider. Pituitary 23(2):140\u2013148. https:\/\/doi.org\/10.1007\/s11102-019-01013-2","journal-title":"Pituitary"},{"issue":"5","key":"1381_CR7","doi-asserted-by":"publisher","first-page":"768","DOI":"10.1007\/s11102-022-01245-9","volume":"25","author":"SM Webb","year":"2022","unstructured":"Webb SM, Valassi E (2022) Quality of life impairment after a diagnosis of Cushing\u2019s syndrome. Pituitary 25(5):768\u2013771. https:\/\/doi.org\/10.1007\/s11102-022-01245-9","journal-title":"Pituitary"},{"issue":"3","key":"1381_CR8","doi-asserted-by":"publisher","first-page":"404","DOI":"10.1111\/cen.12521","volume":"82","author":"A Carluccio","year":"2015","unstructured":"Carluccio A, Sundaram NK, Chablani S et al (2015) Predictors of quality of life in 102 patients with treated Cushing\u2019s disease. Clin Endocrinol (Oxf) 82(3):404\u2013411. https:\/\/doi.org\/10.1111\/cen.12521","journal-title":"Clin Endocrinol (Oxf)"},{"key":"1381_CR9","doi-asserted-by":"publisher","DOI":"10.1210\/jendso\/bvab109","author":"R Acree","year":"2021","unstructured":"Acree R, Miller CM, Abel BS, Neary NM, Campbell K, Nieman LK (2021) Patient and provider perspectives on postsurgical recovery of Cushing syndrome. J Endocr Soc. https:\/\/doi.org\/10.1210\/jendso\/bvab109","journal-title":"J Endocr Soc"},{"issue":"1","key":"1381_CR10","doi-asserted-by":"publisher","first-page":"57","DOI":"10.1186\/s13023-017-0608-2","volume":"12","author":"BM Ca","year":"2017","unstructured":"Ca BM, Badiu C, Bonomi M et al (2017) Developing and evaluating rare disease educational materials co-created by expert clinicians and patients: the paradigm of congenital hypogonadotropic hypogonadism. Orphanet J Rare Dis 12(1):57. https:\/\/doi.org\/10.1186\/s13023-017-0608-2","journal-title":"Orphanet J Rare Dis"},{"issue":"3","key":"1381_CR11","doi-asserted-by":"publisher","first-page":"341","DOI":"10.1530\/EJE-21-1071","volume":"186","author":"EB Geer","year":"2022","unstructured":"Geer EB, Kilgallon JL, Liebert KJP, Kimball A, Nachtigall LB (2022) Virtual education programming for patients with acromegaly: a pilot study. Eur J Endocrinol 186(3):341\u2013349. https:\/\/doi.org\/10.1530\/EJE-21-1071","journal-title":"Eur J Endocrinol"},{"issue":"3","key":"1381_CR12","doi-asserted-by":"publisher","first-page":"383","DOI":"10.1530\/EJE-11-0272","volume":"165","author":"E Valassi","year":"2011","unstructured":"Valassi E, Santos A, Yaneva M et al (2011) The European registry on Cushing\u2019s syndrome: 2-year experience. Baseline demographic and clinical characteristics. Eur J Endocrinol 165(3):383\u2013392. https:\/\/doi.org\/10.1530\/EJE-11-0272","journal-title":"Eur J Endocrinol"},{"issue":"5","key":"1381_CR13","doi-asserted-by":"publisher","first-page":"489","DOI":"10.1007\/s11102-017-0838-2","volume":"20","author":"FF Casanueva","year":"2017","unstructured":"Casanueva FF, Barkan AL, Buchfelder M et al (2017) Criteria for the definition of pituitary tumor centers of excellence (PTCOE): a pituitary society statement. Pituitary 20(5):489\u2013498. https:\/\/doi.org\/10.1007\/s11102-017-0838-2","journal-title":"Pituitary"},{"issue":"3","key":"1381_CR14","doi-asserted-by":"publisher","first-page":"337","DOI":"10.1530\/EJE-12-0325","volume":"167","author":"A Santos","year":"2012","unstructured":"Santos A, Resmini E, Martinez-Momblan MA et al (2012) Psychometric performance of the Cushing QoL questionnaire in conditions of real clinical practice. Eur J Endocrinol 167(3):337\u2013342. https:\/\/doi.org\/10.1530\/EJE-12-0325","journal-title":"Eur J Endocrinol"},{"issue":"10","key":"1381_CR15","doi-asserted-by":"publisher","first-page":"914","DOI":"10.1056\/NEJMoa1105743","volume":"366","author":"A Colao","year":"2012","unstructured":"Colao A, Petersenn S, Newell-Price J et al (2012) A 12-month phase 3 study of pasireotide in Cushing\u2019s disease. N Engl J Med 366(10):914\u2013924. https:\/\/doi.org\/10.1056\/NEJMoa1105743","journal-title":"N Engl J Med"},{"issue":"6","key":"1381_CR16","doi-asserted-by":"publisher","first-page":"2039","DOI":"10.1210\/jc.2011-3350","volume":"97","author":"M Fleseriu","year":"2012","unstructured":"Fleseriu M, Biller BM, Findling JW et al (2012) Mifepristone, a glucocorticoid receptor antagonist, produces clinical and metabolic benefits in patients with Cushing\u2019s syndrome. J Clin Endocrinol Metab 97(6):2039\u20132049. https:\/\/doi.org\/10.1210\/jc.2011-3350","journal-title":"J Clin Endocrinol Metab"},{"issue":"1","key":"1381_CR17","doi-asserted-by":"publisher","first-page":"104","DOI":"10.1007\/s11102-020-01103-6","volume":"24","author":"EB Geer","year":"2021","unstructured":"Geer EB, Salvatori R, Elenkova A et al (2021) Levoketoconazole improves clinical signs and symptoms and patient-reported outcomes in patients with Cushing\u2019s syndrome. Pituitary 24(1):104\u2013115. https:\/\/doi.org\/10.1007\/s11102-020-01103-6","journal-title":"Pituitary"},{"issue":"9","key":"1381_CR18","doi-asserted-by":"publisher","first-page":"748","DOI":"10.1016\/S2213-8587(20)30240-0","volume":"8","author":"R Pivonello","year":"2020","unstructured":"Pivonello R, Fleseriu M, Newell-Price J et al (2020) Efficacy and safety of osilodrostat in patients with Cushing\u2019s disease (LINC 3): a multicentre phase III study with a double-blind, randomised withdrawal phase. Lancet Diabetes Endocrinol 8(9):748\u2013761. https:\/\/doi.org\/10.1016\/S2213-8587(20)30240-0","journal-title":"Lancet Diabetes Endocrinol"},{"key":"1381_CR19","doi-asserted-by":"publisher","DOI":"10.1007\/s11102-023-01314-7","author":"G Page-Wilson","year":"2023","unstructured":"Page-Wilson G, Oak B, Silber A et al (2023) Evaluating the burden of endogenous Cushing\u2019s syndrome using a web-based questionnaire and validated patient-reported outcome measures. Pituitary. https:\/\/doi.org\/10.1007\/s11102-023-01314-7","journal-title":"Pituitary"},{"key":"1381_CR20","doi-asserted-by":"publisher","first-page":"199","DOI":"10.1007\/s12020-015-0737-0","volume":"53","author":"MA Mart\u00ednez-Mombl\u00e1n","year":"2016","unstructured":"Mart\u00ednez-Mombl\u00e1n MA, G\u00f3mez C, Santos A et al (2016) A specific nursing educational program in patients with Cushing\u2019s syndrome. Endocrine 53:199\u2013209. https:\/\/doi.org\/10.1007\/s12020-015-0737-0","journal-title":"Endocrine"}],"container-title":["Pituitary"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11102-024-01381-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11102-024-01381-4\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11102-024-01381-4.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,4,12]],"date-time":"2024-04-12T04:33:33Z","timestamp":1712896413000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11102-024-01381-4"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,2,5]]},"references-count":20,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2024,4]]}},"alternative-id":["1381"],"URL":"https:\/\/doi.org\/10.1007\/s11102-024-01381-4","relation":{"has-preprint":[{"id-type":"doi","id":"10.21203\/rs.3.rs-3399335\/v1","asserted-by":"object"}]},"ISSN":["1386-341X","1573-7403"],"issn-type":[{"value":"1386-341X","type":"print"},{"value":"1573-7403","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,2,5]]},"assertion":[{"value":"7 January 2024","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"5 February 2024","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors declare no competing interests.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"As an educational quality initiative project using de-identified data, it was determined that our project did not constitute human subjects research and thus did not require IRB oversight.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}