{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,14]],"date-time":"2026-02-14T09:57:58Z","timestamp":1771063078770,"version":"3.50.1"},"reference-count":33,"publisher":"Oxford University Press (OUP)","issue":"12","license":[{"start":{"date-parts":[[2021,2,15]],"date-time":"2021-02-15T00:00:00Z","timestamp":1613347200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100001003","name":"Boehringer Ingelheim","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001003","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2021,12,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:sec>\n                  <jats:title>Objectives<\/jats:title>\n                  <jats:p>Interstitial lung disease is frequent in SSc (SSc-ILD) and associates with significantly reduced quality of life. Here we aimed to analyse patient pathways, and experiences of patients and healthcare providers (HCPs) in order to identify unmet needs in the management of SSc-ILD patients.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Methods<\/jats:title>\n                  <jats:p>Semi-structured qualitative interviews conducted in eight European countries looked at HCP (n\u2009=\u200995) and patient perspectives (n\u2009=\u200947) using two sets of 70 research questions. Pre-diagnostic, diagnostic and post-diagnostic phases of the patient pathway were systematically explored.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>(i) In the pre-diagnostic phase several gaps were identified by HCPs and patients in all participating countries: limited disease knowledge among primary care physicians and specialists, lack of accurate patient information, and delayed and\/or inappropriate referral. (ii) The diagnostic phase is in most countries coordinated by rheumatologists, who are also the main point of care. Depending on the local health system, organization of multidisciplinary collaboration varies. HCPs issued lack of national guidelines, while patients stated difficulties obtaining disease-related information. (iii) In the post-diagnostic phase, HCPs and patients indicated lack of curative treatment, specialized nurses, and paramedical\u00a0 and psychological support. Patients and caregivers additionally expressed the need for clear information on SSc-ILD.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusion<\/jats:title>\n                  <jats:p>Lack of disease specific knowledge, gaps in national healthcare systems and insufficient information and support for patients and caregivers were identified as unmet needs to ensure timely diagnosis, provide better patient management and to improve quality of life in SSc-ILD patients.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1093\/rheumatology\/keab154","type":"journal-article","created":{"date-parts":[[2021,2,11]],"date-time":"2021-02-11T21:29:48Z","timestamp":1613078988000},"page":"5601-5609","source":"Crossref","is-referenced-by-count":18,"title":["Identifying unmet needs in SSc-ILD by semi-qualitative in-depth interviews"],"prefix":"10.1093","volume":"60","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6467-7422","authenticated-orcid":false,"given":"Anna-Maria","family":"Hoffmann-Vold","sequence":"first","affiliation":[{"name":"Department of Rheumatology, Oslo University Hospital, Oslo, Norway"}]},{"given":"Elisabeth","family":"Bendstrup","sequence":"additional","affiliation":[{"name":"Department of Respiratory Disease and Allergy, Centre for Rare Lung Diseases, Aarhus University Hospital, Aarhus, Denmark"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0364-1642","authenticated-orcid":false,"given":"Theodoros","family":"Dimitroulas","sequence":"additional","affiliation":[{"name":"Fourth Department of Internal Medicine, Hippokration Hospital, School of Medicine, Aristotle University of Thessaloniki, Thessaloniki, Greece"}]},{"given":"Roger","family":"Hesselstrand","sequence":"additional","affiliation":[{"name":"Section of Rheumatology, Department of Clinical Sciences, Sk\u00e5ne University Hospital, Lund, Sweden"}]},{"given":"Antonio","family":"Morais","sequence":"additional","affiliation":[{"name":"Department of Pulmonology Centro Hospitalar, Universit\u00e1rio de S\u00e3o Jo\u00e3o, Faculdade de Medicina do Porto, Porto, Portugal"}]},{"given":"Ritva","family":"Peltomaa","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Helsinki University Hospital, Helsinki, Finland"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6271-7945","authenticated-orcid":false,"given":"Vanessa","family":"Smith","sequence":"additional","affiliation":[{"name":"Department of Internal Medicine, Ghent University; Department of Rheumatology, Ghent University Hospital; Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Centre (IRC), Gent, Belgium"}]},{"given":"Joep","family":"Welling","sequence":"additional","affiliation":[{"name":"FESCA Federation of European Scleroderma Associations, NVLE, Utrecht"}]},{"given":"Madelon C","family":"Vonk","sequence":"additional","affiliation":[{"name":"Department of Rheumatology, Radboud University Medical Centre, Nijmegen, The Netherlands"}]},{"given":"Wim A","family":"Wuyts","sequence":"additional","affiliation":[{"name":"Department of Pulmonology, University Hospitals Leuven, Leuven, Belgium"}]}],"member":"286","published-online":{"date-parts":[[2021,2,15]]},"reference":[{"key":"2022012512183989600_keab154-B1","doi-asserted-by":"crossref","first-page":"1535","DOI":"10.1183\/13993003.00829-2015","article-title":"Connective tissue diseases, multimorbidity and the ageing lung","volume":"47","author":"Spagnolo","year":"2016","journal-title":"Eur Respir J"},{"key":"2022012512183989600_keab154-B2","doi-asserted-by":"crossref","first-page":"1112","DOI":"10.1002\/art.24676","article-title":"Health-related quality of life in systemic sclerosis: a systematic review","volume":"61","author":"Hudson","year":"2009","journal-title":"Arthritis 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