{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,7]],"date-time":"2025-10-07T08:06:08Z","timestamp":1759824368828,"version":"3.37.3"},"reference-count":13,"publisher":"Springer Science and Business Media LLC","issue":"3","license":[{"start":{"date-parts":[[2020,10,23]],"date-time":"2020-10-23T00:00:00Z","timestamp":1603411200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springer.com\/tdm"},{"start":{"date-parts":[[2020,10,23]],"date-time":"2020-10-23T00:00:00Z","timestamp":1603411200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springer.com\/tdm"}],"funder":[{"DOI":"10.13039\/100000002","name":"National Institutes of Health","doi-asserted-by":"publisher","award":["K23AR067889","K24AR063120-07","R01 AR073208","R01 AR073284","K23AR075112"],"award-info":[{"award-number":["K23AR067889","K24AR063120-07","R01 AR073208","R01 AR073284","K23AR075112"]}],"id":[{"id":"10.13039\/100000002","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100001845","name":"Scleroderma Research Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001845","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100001003","name":"Boehringer Ingelheim","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001003","id-type":"DOI","asserted-by":"publisher"}]},{"name":"Eicos Science,Inc"},{"DOI":"10.13039\/100014247","name":"Immune Tolerance Network","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014247","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007659","name":"Bayer Corporation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007659","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100001009","name":"Bristol-Myers Squibb Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001009","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100014480","name":"Horizon Pharmaceuticals","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100014480","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008648","name":"Pfizer Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008648","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Clin Rheumatol"],"published-print":{"date-parts":[[2021,3]]},"DOI":"10.1007\/s10067-020-05467-9","type":"journal-article","created":{"date-parts":[[2020,10,22]],"date-time":"2020-10-22T19:04:31Z","timestamp":1603393471000},"page":"965-971","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Does hand involvement in systemic sclerosis limit completion of patient-reported outcome measures?"],"prefix":"10.1007","volume":"40","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-5472-3840","authenticated-orcid":false,"given":"Tracy M.","family":"Frech","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John M.","family":"VanBuren","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emily","family":"Startup","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Shervin","family":"Assassi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elana J.","family":"Bernstein","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Flavia V.","family":"Castelino","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lorinda","family":"Chung","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Chase","family":"Correia","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica K.","family":"Gordon","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Faye N.","family":"Hant","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Laura","family":"Hummers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dinesh","family":"Khanna","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nora","family":"Sandorfi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ami A.","family":"Shah","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Victoria K.","family":"Shanmugam","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Virginia","family":"Steen","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Luke","family":"Evnin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2020,10,23]]},"reference":[{"issue":"10","key":"5467_CR1","doi-asserted-by":"publisher","DOI":"10.1097\/MD.0000000000002759","volume":"95","author":"LE Leggett","year":"2016","unstructured":"Leggett LE, Khadaroo RG, Holroyd-Leduc J, Lorenzetti DL, Hanson H, Wagg A et al (2016) Measuring resource utilization: a systematic review of validated self-reported questionnaires. Medicine (Baltimore) 95(10):e2759","journal-title":"Medicine (Baltimore)"},{"issue":"1","key":"5467_CR2","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0810-x","volume":"13","author":"A Slade","year":"2018","unstructured":"Slade A, Isa F, Kyte D, Pankhurst T, Kerecuk L, Ferguson J et al (2018) Patient reported outcome measures in rare diseases: a narrative review. Orphanet J Rare Dis 13(1):61","journal-title":"Orphanet J Rare Dis"},{"key":"5467_CR3","doi-asserted-by":"publisher","first-page":"S76","DOI":"10.1111\/j.1524-4733.2007.00270.x","volume":"10 Suppl 2","author":"CF Snyder","year":"2007","unstructured":"Snyder CF, Watson ME, Jackson JD, Cella D, Halyard MY, Mayo FDAP-ROCMG (2007) Patient-reported outcome instrument selection: designing a measurement strategy. Value Health 10 Suppl 2:S76\u2013S85","journal-title":"Value Health"},{"issue":"1","key":"5467_CR4","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1007\/s10067-019-04792-y","volume":"39","author":"VK Shanmugam","year":"2020","unstructured":"Shanmugam VK, Frech TM, Steen VD, Hummers LK, Shah AA, Bernstein EJ et al (2020) Collaborative National Quality and Efficacy Registry (CONQUER) for scleroderma: outcomes from a multicenter US-based systemic sclerosis registry. Clin Rheumatol 39(1):93\u2013102","journal-title":"Clin Rheumatol"},{"key":"5467_CR5","doi-asserted-by":"publisher","first-page":"S98","DOI":"10.1002\/acr.20598","volume":"63 Suppl 11","author":"J Pope","year":"2011","unstructured":"Pope J (2011) Measures of systemic sclerosis (scleroderma): Health Assessment Questionnaire (HAQ) and Scleroderma HAQ (SHAQ), physician- and patient-rated global assessments, Symptom Burden Index (SBI), University of California, Los Angeles, Scleroderma Clinical Trials Consortium Gastrointestinal Scale (UCLA SCTC GIT) 2.0, Baseline Dyspnea Index (BDI) and Transition Dyspnea Index (TDI) (Mahler's Index), Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR), and Raynaud's Condition Score (RCS). Arthritis Care Res (Hoboken) 63 Suppl 11:S98\u2013S111","journal-title":"Arthritis Care Res (Hoboken)"},{"issue":"1","key":"5467_CR6","doi-asserted-by":"publisher","first-page":"64","DOI":"10.3899\/jrheum.140143","volume":"42","author":"ME Hinchcliff","year":"2015","unstructured":"Hinchcliff ME, Beaumont JL, Carns MA, Podlusky S, Thavarajah K, Varga J et al (2015) Longitudinal evaluation of PROMIS-29 and FACIT-dyspnea short forms in systemic sclerosis. J Rheumatol 42(1):64\u201372","journal-title":"J Rheumatol"},{"issue":"1","key":"5467_CR7","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1186\/s13075-019-2087-4","volume":"22","author":"L Mouthon","year":"2020","unstructured":"Mouthon L, Poiraudeau S, Vernon M, Papadakis K, Perchenet L, Khanna D (2020) Psychometric validation of the Hand Disability in Systemic Sclerosis-Digital Ulcers (HDISS-DU(R)) patient-reported outcome instrument. Arthritis Res Ther 22(1):3","journal-title":"Arthritis Res Ther"},{"issue":"3","key":"5467_CR8","first-page":"158","volume":"167","author":"A Christensen","year":"2015","unstructured":"Christensen A, Khalique S, Cenac S, Fligelstone K, Mawdsley A, Frech T et al (2015) Systemic sclerosis related calcinosis: patients provide what specialists want to learn. J La State Med Soc 167(3):158\u2013159","journal-title":"J La State Med Soc"},{"issue":"2","key":"5467_CR9","doi-asserted-by":"publisher","first-page":"329","DOI":"10.1016\/j.semarthrit.2019.11.003","volume":"50","author":"RD Sandler","year":"2020","unstructured":"Sandler RD, Matucci-Cerinic M, Hughes M (2020) Musculoskeletal hand involvement in systemic sclerosis. Semin Arthritis Rheum 50(2):329\u2013334","journal-title":"Semin Arthritis Rheum"},{"issue":"3","key":"5467_CR10","doi-asserted-by":"publisher","first-page":"252","DOI":"10.1007\/s40674-016-0052-9","volume":"2","author":"A Young","year":"2016","unstructured":"Young A, Namas R, Dodge C, Khanna D (2016) Hand impairment in systemic sclerosis: various manifestations and currently available treatment. Curr Treatm Opt Rheumatol 2(3):252\u2013269","journal-title":"Curr Treatm Opt Rheumatol"},{"key":"5467_CR11","doi-asserted-by":"publisher","first-page":"79","DOI":"10.1186\/1477-7525-4-79","volume":"4","author":"Health USDo, Human Services FDACfDE, Research, Health USDo, Human Services FDACfBE, Research","year":"2006","unstructured":"Health USDo, Human Services FDACfDE, Research, Health USDo, Human Services FDACfBE, Research et al (2006) Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 4:79","journal-title":"Health Qual Life Outcomes"},{"issue":"2","key":"5467_CR12","doi-asserted-by":"publisher","first-page":"163","DOI":"10.1586\/erp.11.12","volume":"11","author":"LD McLeod","year":"2011","unstructured":"McLeod LD, Coon CD, Martin SA, Fehnel SE, Hays RD (2011) Interpreting patient-reported outcome results: US FDA guidance and emerging methods. Expert Rev Pharmacoecon Outcomes Res 11(2):163\u2013169","journal-title":"Expert Rev Pharmacoecon Outcomes Res"},{"issue":"9","key":"5467_CR13","doi-asserted-by":"publisher","first-page":"1129","DOI":"10.1016\/j.acra.2014.05.008","volume":"21","author":"SD Rundell","year":"2014","unstructured":"Rundell SD (2014) Including patient-reported outcomes and patient-reported resource-use questionnaires in studies. Acad Radiol 21(9):1129\u20131137","journal-title":"Acad Radiol"}],"container-title":["Clinical Rheumatology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10067-020-05467-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s10067-020-05467-9\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10067-020-05467-9.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,10,22]],"date-time":"2021-10-22T19:15:02Z","timestamp":1634930102000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s10067-020-05467-9"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,10,23]]},"references-count":13,"journal-issue":{"issue":"3","published-print":{"date-parts":[[2021,3]]}},"alternative-id":["5467"],"URL":"https:\/\/doi.org\/10.1007\/s10067-020-05467-9","relation":{},"ISSN":["0770-3198","1434-9949"],"issn-type":[{"type":"print","value":"0770-3198"},{"type":"electronic","value":"1434-9949"}],"subject":[],"published":{"date-parts":[[2020,10,23]]},"assertion":[{"value":"4 May 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"9 October 2020","order":2,"name":"revised","label":"Revised","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"13 October 2020","order":3,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"23 October 2020","order":4,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with ethical standards"}},{"value":"None.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Disclosures"}}]}}