{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,28]],"date-time":"2026-08-28T22:26:31Z","timestamp":1787955991184,"version":"build-2784847793"},"reference-count":14,"publisher":"Springer Science and Business Media LLC","issue":"4","license":[{"start":{"date-parts":[[2020,9,11]],"date-time":"2020-09-11T00:00:00Z","timestamp":1599782400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2020,9,11]],"date-time":"2020-09-11T00:00:00Z","timestamp":1599782400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100008349","name":"Boehringer Ingelheim","doi-asserted-by":"publisher","award":["N\/A"],"award-info":[{"award-number":["N\/A"]}],"id":[{"id":"10.13039\/100008349","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Clin Rheumatol"],"published-print":{"date-parts":[[2021,4]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Introduction<\/jats:title>\n                <jats:p>Systemic sclerosis (SSc) is a rare condition that can be complicated by interstitial lung fibrosis (SSc-ILD)\u2014a major cause of mortality. This study explored information and communication needs of patients with SSc-ILD and their carers to understand what they are and whether they are met.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Qualitative research was performed, including in-depth individual interviews and observed conversations between pairs of patients, physicians and nurses, and between patients and physicians discussing experiences of SSc-ILD. The study was performed in Germany, Italy, Spain, the UK and the USA. Participants included 42 SSc-treating physicians, 21 patients with diagnosed SSc-ILD, 16 specialist nurses and five carers.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Prognosis and mortality were the main unspoken topics acknowledged by patients, carers and healthcare professionals. Patients and carers felt afraid to ask physicians about mortality, and most physicians reported avoiding the question because their duty was to give patients hope and avoid causing additional distress. Patients often felt unable to ask physicians about relationships, family and work because of time constraints or because they felt these were not topics physicians would be concerned about. Often, specialist nurses felt that they had insufficient knowledge to provide adequate support.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>Key topics, including mortality and prognosis, are rarely openly discussed, leaving patients uncertain and anxious about the future. By communicating about difficult but important topics, physicians and nurses could help patients and carers manage and plan their lives. This study shows that a multi-professional team-based communication approach is likely to better address patient needs and priorities.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>\n                           <jats:bold>Key Points<\/jats:bold>\n                        <\/jats:title>\n                <jats:p>\u2022 <jats:italic>Key topics in SSc or SSc-ILD, such as mortality and prognosis, are rarely openly discussed in clinical consultations.<\/jats:italic><\/jats:p>\n                <jats:p>\u2022 <jats:italic>By communicating difficult but important topics, physicians and nurses could help patients manage their disease and plan their lives.<\/jats:italic><\/jats:p>\n                <jats:p>\u2022 <jats:italic>A multi-professional team-based communication approach is likely to better address patient needs and priorities and could be easily implemented without the need for significant additional resources.<\/jats:italic><\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s10067-020-05371-2","type":"journal-article","created":{"date-parts":[[2020,9,11]],"date-time":"2020-09-11T14:03:22Z","timestamp":1599833002000},"page":"1399-1407","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Things left unsaid: important topics that are not discussed between patients with systemic sclerosis, their carers and their healthcare professionals\u2014a discourse analysis"],"prefix":"10.1007","volume":"40","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3975-8938","authenticated-orcid":false,"given":"Christopher P.","family":"Denton","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bee","family":"Laird","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lizette","family":"Moros","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jose Luis","family":"Luna Flores","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,9,11]]},"reference":[{"issue":"8","key":"5371_CR1","doi-asserted-by":"publisher","first-page":"2246","DOI":"10.1002\/art.11073","volume":"48","author":"MD Mayes","year":"2003","unstructured":"Mayes MD, Lacey JV Jr, Beebe-Dimmer J, Gillespie BW, Cooper B, Laing TJ, Schottenfeld D (2003) Prevalence, incidence, survival, and disease characteristics of systemic sclerosis in a large US population. 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He has received consultancy payments from Bayer, Inventiva, GlaxoSmithKline and CSL Behring, Boehringer Ingelheim, Actelion, Roche and Sanofi-Aventis. L Moros and JL Luna Flores are employees of Boehringer Ingelheim. B Laird was a contractor to Boehringer Ingelheim at the time this research was conducted. This study was supported by Boehringer Ingelheim International GmbH (BI). The authors meet the criteria for authorship as recommended by the International Committee of Medical Journal Editors (ICMJE). The authors did not receive compensation related to the development of the manuscript. Writing support was provided by John Redrobe, PhD, of Hamell Communications and editorial support was provided by Islay Steele, PhD, of Nucleus Global, which was contracted and funded by BI. BI was given the opportunity to review the manuscript for medical and scientific accuracy as well as intellectual property considerations.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"The research outline for this study was discussed with the Reading Independent Ethics Committee (UK) who advised that ethics approval was not required. Additionally, and per the European Pharmaceutical Market Research Organisation (EphMRA) Code of Conduct 2019, this research was classified as market research and therefore not does not require ethics committee approval (includes Brazil, Canada, Denmark, Finland, France, Germany, Greece, Italy, Japan, Mexico, Netherlands, Norway, Poland, Russia, South Korea, Spain, Sweden, Turkey, the UK and the USA).","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"All participants provided written, informed consent before participating in the study.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"Patient consent was obtained for the use of anonymised data.","order":5,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The sponsor reviewed the design of the study and the proposed methods of data collection but was not involved in the analysis of data. The sponsor also reviewed the results and interpretation of the data, and reviewed and commented on all drafts of the manuscript.","order":6,"name":"Ethics","group":{"name":"EthicsHeading","label":"Disclaimer"}}]}}