{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,9]],"date-time":"2026-11-09T16:55:41Z","timestamp":1794243341157,"version":"4.9.0"},"reference-count":18,"publisher":"Wiley","issue":"8","license":[{"start":{"date-parts":[[2024,7,8]],"date-time":"2024-07-08T00:00:00Z","timestamp":1720396800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"content-domain":{"domain":["acrjournals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Arthritis Care &amp;amp; Research"],"published-print":{"date-parts":[[2024,8]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>Patient engagement is critical to clinical practice guideline (CPG) development. This work presents our approach to ascertaining patients\u2019 values and preferences to inform the American College of Rheumatology guidelines for screening, monitoring, and treatment of interstitial lung disease (ILD) in people with systemic autoimmune rheumatic diseases (SARDs).<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We conducted a cross\u2010sectional qualitative study of a purposefully sampled Patient Panel using a modified content analytic approach. The study team reviewed text transcripts from the Patient Panel discussion to identify themes and develop a clustered thematic schema.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010one patients (75% women) participated, with a mean age of 53 years (range 33\u201373). Patients had one or more SARDs: systemic sclerosis (38%), Sj\u00f6gren disease (38%), idiopathic inflammatory myopathy (33%), rheumatoid arthritis (24%), and mixed connective tissue disease (10%). We identified 10 themes in 4 thematic clusters: communication, screening and monitoring, treatment goals, and treatment adverse effects. Patients prioritized recognizing ILD symptoms, importance of ILD screening and close monitoring, goals of survival and improving quality of life, and willingness to accept treatment risks provided that there is close communication with providers. Patient representatives shared patients\u2019 priorities and insight at the Voting Panel meeting, influencing multiple guideline recommendations.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>Patient engagement fosters a holistic approach to CPG development, leading to recommendations aiming for the best clinical outcomes while prioritizing outcomes important for patients. The patient\u2010identified themes played a critical role in ILD guideline development and provide core elements for shared decision\u2010making as clinicians make management and therapeutic decisions with patients with SARD\u2010associated ILD.<\/jats:p><jats:p><jats:boxed-text content-type=\"graphic\" position=\"anchor\"><jats:graphic xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" mimetype=\"image\/png\" position=\"anchor\" specific-use=\"enlarged-web-image\" xlink:href=\"graphic\/acr25346-toc-0001-m.png\"><jats:alt-text>image<\/jats:alt-text><\/jats:graphic><\/jats:boxed-text><\/jats:p><\/jats:sec>","DOI":"10.1002\/acr.25346","type":"journal-article","created":{"date-parts":[[2024,7,8]],"date-time":"2024-07-08T07:05:43Z","timestamp":1720422343000},"page":"1083-1089","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":20,"title":["Assessing Patient Values and Preferences to Inform the 2023 American College of Rheumatology\/American College of Chest Physicians Interstitial Lung Disease Guidelines"],"prefix":"10.1002","volume":"76","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0576-4208","authenticated-orcid":false,"given":"Reza D.","family":"Mirza","sequence":"first","affiliation":[{"name":"McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5413-9345","authenticated-orcid":false,"given":"Marcy B.","family":"Bolster","sequence":"additional","affiliation":[{"name":"Massachusetts General Hospital  Boston"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0591-2976","authenticated-orcid":false,"given":"Sindhu R.","family":"Johnson","sequence":"additional","affiliation":[{"name":"Toronto Western Hospital  Toronto Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"suffix":"Jr","given":"Aberdeen","family":"Allen","sequence":"additional","affiliation":[{"name":"American College of Rheumatology SARD\u2010ILD Patient Panel"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elana J.","family":"Bernstein","sequence":"additional","affiliation":[{"name":"Columbia University  New York City"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan H.","family":"Chung","sequence":"additional","affiliation":[{"name":"The University of Chicago  Chicago Illinois"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sonye K.","family":"Danoff","sequence":"additional","affiliation":[{"name":"Johns Hopkins University School of Medicine  Baltimore Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Falardeau","sequence":"additional","affiliation":[{"name":"American College of Rheumatology SARD\u2010ILD Patient Panel"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gordon","family":"Guyatt","sequence":"additional","affiliation":[{"name":"McMaster University  Hamilton Ontario Canada"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8015-3626","authenticated-orcid":false,"given":"Ilya","family":"Ivlev","sequence":"additional","affiliation":[{"name":"Oregon Health &amp; Science University  Portland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1412-4453","authenticated-orcid":false,"given":"Dinesh","family":"Khanna","sequence":"additional","affiliation":[{"name":"University of Michigan  Ann Arbor"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kiana T.","family":"Nesbitt","sequence":"additional","affiliation":[{"name":"American College of Rheumatology SARD\u2010ILD Patient Panel"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7695-2022","authenticated-orcid":false,"given":"Amy","family":"Turner","sequence":"additional","affiliation":[{"name":"American College of Rheumatology  Atlanta Georgia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Stacey","family":"Uhl","sequence":"additional","affiliation":[{"name":"ERCI Institute, Plymouth Meeting  Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0398-2308","authenticated-orcid":false,"given":"Michael D.","family":"George","sequence":"additional","affiliation":[{"name":"Hospital of the University of Pennsylvania  Philadelphia"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2024,7,8]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.39489.470347.AD"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1503\/cmaj.090449"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-156-7-201204030-00009"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-017-0070-2"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.rdc.2022.04.001"},{"key":"e_1_2_7_7_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.42860"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/art.42861"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1080\/03009742.2017.1299793"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.24849"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732305276687"},{"key":"e_1_2_7_12_1","doi-asserted-by":"publisher","DOI":"10.3899\/jrheum.151309"},{"key":"e_1_2_7_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2213-2600(16)30152-7"},{"key":"e_1_2_7_14_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13012-018-0745-6"},{"key":"e_1_2_7_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s41927-022-00310-x"},{"key":"e_1_2_7_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr2.11199"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.23275"},{"key":"e_1_2_7_18_1","doi-asserted-by":"publisher","DOI":"10.1002\/acr.22758"},{"key":"e_1_2_7_19_1","doi-asserted-by":"publisher","DOI":"10.1186\/s41927-022-00310-x"}],"container-title":["Arthritis Care &amp; 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