{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,27]],"date-time":"2026-10-27T12:52:23Z","timestamp":1793105543573,"version":"4.5.0"},"reference-count":27,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2025,1,22]],"date-time":"2025-01-22T00:00:00Z","timestamp":1737504000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,1,22]],"date-time":"2025-01-22T00:00:00Z","timestamp":1737504000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100008501","name":"East Carolina University","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100008501","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Lung"],"published-print":{"date-parts":[[2025,12]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Purpose<\/jats:title>\n                    <jats:p>The priorities and concerns of sarcoidosis patients in the United States (US) have not been well-described.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>A survey constructed by sarcoidosis patients and doctors was administered to US sarcoidosis patients. The survey queried patients concerning their demographics, disease state, disease impact on health and well-being, health care priorities and impressions of sarcoidosis care. Respondents were solicited via social media and networking with sarcoidosis clinicians.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>1018 US sarcoidosis patients completed this survey. 65% were female, 63% White, 34% Black, and 87%\u2009&gt;\u200945\u00a0years old. The most common organs involved were the lungs 87%, skin 30%, heart 25%, and eyes 25%. Household income was\u2009&lt;\u2009$50\u00a0K in 31% and\u2009&gt;\u2009$150\u00a0K in 14% of patients. There was a fairly even split between those living in urban (29%), suburban (42%), and rural (29%) environments. The patients\u2019greatest concerns were fear of worsening disease, fear of sarcoidosis developing in more organs, and fear of sarcoidosis not improving. These were closely followed by concerns about poor health-related quality of life (HRQoL), inability to enjoy everyday activities, lack of medical research, disability from sarcoidosis, and pulmonary function status. Lack of physician knowledge and poor physician communication were ranked of lowest concern. Concerns about ineffective medications and cost of medical care were also ranked relatively low. Patients overwhelmingly considered information from their doctor as very useful.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>In this survey of over 1000 US sarcoidosis patients, their greatest concerns were fear of poor clinical outcomes. The patients were relatively less concerned about their doctors\u2019 knowledge about sarcoidosis and poor physician communication. Although patients expressed significant concerns about poor HRQoL, not all domains of HRQoL were equally affected. US sarcoidosis patients rank concerns about disease progression higher than disease impact on HRQoL.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1007\/s00408-024-00761-8","type":"journal-article","created":{"date-parts":[[2025,1,22]],"date-time":"2025-01-22T06:29:14Z","timestamp":1737527354000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["A Snapshot of United States Sarcoidosis Patients and their Perceived Disease Impact: Results of the Sarcoidosis Research Institute Survey"],"prefix":"10.1007","volume":"203","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4692-1345","authenticated-orcid":false,"given":"Ogugua Ndili","family":"Obi","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Paula Yette","family":"Polite","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kenneth M.","family":"Fish","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"DeLuca","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6963-4349","authenticated-orcid":false,"given":"Paul J.","family":"Feustel","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Alexandra E.","family":"Mandis","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annetta M.","family":"Coleman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4663-7985","authenticated-orcid":false,"given":"Marc A.","family":"Judson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2025,1,22]]},"reference":[{"issue":"11","key":"761_CR1","doi-asserted-by":"publisher","first-page":"1018","DOI":"10.1056\/NEJMra2101555","volume":"385","author":"M Drent","year":"2021","unstructured":"Drent M, Crouser ED, Grunewald J (2021) Challenges of sarcoidosis and its management. N Engl J Med 385(11):1018\u20131032","journal-title":"N Engl J Med"},{"key":"761_CR2","doi-asserted-by":"publisher","DOI":"10.1016\/j.rmed.2021.106564","volume":"187","author":"Y Zhou","year":"2021","unstructured":"Zhou Y et al (2021) The impact of demographic disparities in the presentation of sarcoidosis: a multicenter prospective study. Respir Med 187:106564","journal-title":"Respir Med"},{"issue":"5","key":"761_CR3","doi-asserted-by":"publisher","first-page":"307","DOI":"10.1093\/qjmed\/hcl038","volume":"99","author":"RP Baughman","year":"2006","unstructured":"Baughman RP et al (2006) Presenting characteristics as predictors of duration of treatment in sarcoidosis. QJM 99(5):307\u2013315","journal-title":"QJM"},{"key":"761_CR4","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.04.00070503","author":"DL Rabin","year":"2004","unstructured":"Rabin DL (2004) Sarcoidosis: social predictors of severity at presentation. Eur Respir J. https:\/\/doi.org\/10.1183\/09031936.04.00070503","journal-title":"Eur Respir J"},{"issue":"10 Pt 1","key":"761_CR5","doi-asserted-by":"publisher","first-page":"1885","DOI":"10.1164\/ajrccm.164.10.2104046","volume":"164","author":"RP Baughman","year":"2001","unstructured":"Baughman RP et al (2001) Clinical characteristics of patients in a case control study of sarcoidosis. Am J Respir Crit Care Med 164(10 Pt 1):1885\u20131889","journal-title":"Am J Respir Crit Care Med"},{"issue":"2","key":"761_CR6","first-page":"119","volume":"29","author":"MA Judson","year":"2012","unstructured":"Judson MA, Boan AD, Lackland DT (2012) The clinical course of sarcoidosis: presentation, diagnosis, and treatment in a large white and black cohort in the United States. Sarcoidosis Vasc Diffuse Lung Dis 29(2):119\u2013127","journal-title":"Sarcoidosis Vasc Diffuse Lung Dis"},{"issue":"3","key":"761_CR7","first-page":"204","volume":"20","author":"MA Judson","year":"2003","unstructured":"Judson MA et al (2003) Two year prognosis of sarcoidosis: the ACCESS experience. Sarcoidosis Vasc Diffuse Lung Dis 20(3):204\u2013211","journal-title":"Sarcoidosis Vasc Diffuse Lung Dis"},{"key":"761_CR8","doi-asserted-by":"publisher","DOI":"10.1183\/13993003.04079-2020","author":"RP Baughman","year":"2021","unstructured":"Baughman RP et al (2021) ERS clinical practice guidelines on treatment of sarcoidosis. Eur Respir J. https:\/\/doi.org\/10.1183\/13993003.04079-2020","journal-title":"Eur Respir J"},{"key":"761_CR9","doi-asserted-by":"publisher","DOI":"10.1183\/23120541.00141-2018","author":"RP Baughman","year":"2018","unstructured":"Baughman RP et al (2018) Sarcoidosis: patient treatment priorities. ERJ Open Res. https:\/\/doi.org\/10.1183\/23120541.00141-2018","journal-title":"ERJ Open Res"},{"key":"761_CR10","doi-asserted-by":"publisher","first-page":"9","DOI":"10.1016\/j.rmed.2017.09.003","volume":"132","author":"NA Khan","year":"2017","unstructured":"Khan NA et al (2017) Toxicity risk from glucocorticoids in sarcoidosis patients. Respir Med 132:9\u201314","journal-title":"Respir Med"},{"issue":"4","key":"761_CR11","doi-asserted-by":"publisher","first-page":"526","DOI":"10.1016\/j.rmed.2015.01.019","volume":"109","author":"MA Judson","year":"2015","unstructured":"Judson MA et al (2015) The effect of corticosteroids on quality of life in a sarcoidosis clinic: the results of a propensity analysis. Respir Med 109(4):526\u2013531","journal-title":"Respir Med"},{"key":"761_CR12","doi-asserted-by":"publisher","DOI":"10.3390\/diagnostics11061089","author":"LA Saketkoo","year":"2021","unstructured":"Saketkoo LA et al (2021) Health-related quality of life (HRQoL) in sarcoidosis: diagnosis, management, and health outcomes. Diagnostics (Basel). https:\/\/doi.org\/10.3390\/diagnostics11061089","journal-title":"Diagnostics (Basel)"},{"issue":"3","key":"761_CR13","doi-asserted-by":"publisher","first-page":"997","DOI":"10.1378\/chest.125.3.997","volume":"125","author":"CE Cox","year":"2004","unstructured":"Cox CE et al (2004) Health-related quality of life of persons with sarcoidosis. Chest 125(3):997\u20131004","journal-title":"Chest"},{"issue":"1","key":"761_CR14","doi-asserted-by":"publisher","first-page":"1014","DOI":"10.1080\/07853890.2022.2063375","volume":"54","author":"C Tana","year":"2022","unstructured":"Tana C et al (2022) Comorbidities of sarcoidosis. Ann Med 54(1):1014\u20131035","journal-title":"Ann Med"},{"key":"761_CR15","doi-asserted-by":"publisher","DOI":"10.3389\/fmed.2022.991783","volume":"9","author":"ON Obi","year":"2022","unstructured":"Obi ON et al (2022) Sarcoidosis: updates on therapeutic drug trials and novel treatment approaches. Front Med (Lausanne) 9:991783","journal-title":"Front Med (Lausanne)"},{"issue":"5","key":"761_CR16","doi-asserted-by":"publisher","first-page":"569","DOI":"10.1007\/s00408-018-0144-4","volume":"196","author":"CC Moor","year":"2018","unstructured":"Moor CC et al (2018) Needs, perceptions and education in sarcoidosis: a live interactive survey of patients and partners. Lung 196(5):569\u2013575","journal-title":"Lung"},{"issue":"2","key":"761_CR17","doi-asserted-by":"publisher","first-page":"155","DOI":"10.1007\/s00408-019-00206-7","volume":"197","author":"M Voortman","year":"2019","unstructured":"Voortman M et al (2019) The burden of sarcoidosis symptoms from a patient perspective. Lung 197(2):155\u2013161","journal-title":"Lung"},{"issue":"2","key":"761_CR18","doi-asserted-by":"publisher","first-page":"112","DOI":"10.5455\/msm.2012.24.112-120","volume":"24","author":"G Ridic","year":"2012","unstructured":"Ridic G, Gleason S, Ridic O (2012) Comparisons of health care systems in the United States, Germany and Canada. Mater Sociomed 24(2):112\u2013120","journal-title":"Mater Sociomed"},{"key":"761_CR19","doi-asserted-by":"publisher","DOI":"10.3390\/healthcare11030447","author":"M Ciulla","year":"2023","unstructured":"Ciulla M et al (2023) Healthcare systems across Europe and the US: the managed entry agreements experience. Healthcare (Basel). https:\/\/doi.org\/10.3390\/healthcare11030447","journal-title":"Healthcare (Basel)"},{"issue":"5","key":"761_CR20","doi-asserted-by":"publisher","first-page":"478","DOI":"10.1097\/MCP.0000000000000602","volume":"25","author":"SJ van Helmondt","year":"2019","unstructured":"van Helmondt SJ et al (2019) Patient perspectives in sarcoidosis. Curr Opin Pulm Med 25(5):478\u2013483","journal-title":"Curr Opin Pulm Med"},{"key":"761_CR21","unstructured":"SurveyMonkey Inc. [cited 2024 June 19]; Available from: https:\/\/www.surveymonkey.com"},{"key":"761_CR22","unstructured":"Sarcoidosis Research Institute. [cited 2024 June 18]; Available from: https:\/\/www.sarcoidosisri.org"},{"key":"761_CR23","unstructured":"Sarcoidosis News; A Bionews Brand. Available from: https:\/\/sarcoidosisnews.com"},{"issue":"5","key":"761_CR24","doi-asserted-by":"publisher","first-page":"716","DOI":"10.1055\/s-0040-1710080","volume":"41","author":"ON Obi","year":"2020","unstructured":"Obi ON (2020) Health-related quality of life in sarcoidosis. Semin Respir Crit Care Med 41(5):716\u2013732","journal-title":"Semin Respir Crit Care Med"},{"issue":"1","key":"761_CR25","doi-asserted-by":"publisher","first-page":"17","DOI":"10.1016\/j.chest.2020.03.001","volume":"158","author":"MA Judson","year":"2020","unstructured":"Judson MA (2020) Causes of poor medication adherence in sarcoidosis: poor patient-doctor communication and suboptimal drug regimens. Chest 158(1):17\u201318","journal-title":"Chest"},{"issue":"11","key":"761_CR26","doi-asserted-by":"publisher","first-page":"1832","DOI":"10.1513\/AnnalsATS.202011-1467OC","volume":"18","author":"LJ Harper","year":"2021","unstructured":"Harper LJ et al (2021) Barriers to care among patients with sarcoidosis: a qualitative study. Ann Am Thorac Soc 18(11):1832\u20131838","journal-title":"Ann Am Thorac Soc"},{"issue":"4","key":"761_CR27","volume":"38","author":"RP Baughman","year":"2022","unstructured":"Baughman RP et al (2022) World association for sarcoidosis and other granulomatous disease (WASOG) centers of excellence. Sarcoidosis Vasc Diffuse Lung Dis 38(4):e2021051","journal-title":"Sarcoidosis Vasc Diffuse Lung Dis"}],"container-title":["Lung"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00408-024-00761-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s00408-024-00761-8","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s00408-024-00761-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,22]],"date-time":"2025-12-22T04:43:30Z","timestamp":1766378610000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s00408-024-00761-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,22]]},"references-count":27,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2025,12]]}},"alternative-id":["761"],"URL":"https:\/\/doi.org\/10.1007\/s00408-024-00761-8","relation":{},"ISSN":["0341-2040","1432-1750"],"issn-type":[{"value":"0341-2040","type":"print"},{"value":"1432-1750","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,22]]},"assertion":[{"value":"8 August 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"16 October 2024","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"22 January 2025","order":3,"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":"Conflict of interest"}}],"article-number":"31"}}