{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,5,14]],"date-time":"2025-05-14T01:11:50Z","timestamp":1747185110895,"version":"3.40.5"},"reference-count":17,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2024,3,4]],"date-time":"2024-03-04T00:00:00Z","timestamp":1709510400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100008373","name":"Takeda Pharmaceutical Company","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008373","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100012112","name":"Swedish Orphan Biovitrum","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100012112","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004337","name":"Roche","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004337","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/501100004191","name":"Novo Nordisk","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004191","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100008322","name":"CSL Behring","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100008322","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004339","name":"Sanofi","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004339","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100004326","name":"Bayer","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100004326","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Haemophilia"],"published-print":{"date-parts":[[2024,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Introduction<\/jats:title><jats:p>The Patient Reported Outcomes, Burdens, and Experiences (PROBE) questionnaire is a patient\u2010reported outcome tool that assesses quality of life and disease burden in people with haemophilia (PWH).<\/jats:p><\/jats:sec><jats:sec><jats:title>Aim<\/jats:title><jats:p>To assesses the test\u2013retest reliability of PROBE when completed using the mobile phone application.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>We recruited PWH, including carriers, and individuals with no bleeding disorders who attended haemophilia\u2010related workshops or via social media. Participants completed PROBE three times (twice on the app: T1 and T2, and once on the web, T3). Test\u2013retest reliability was analysed for T1 versus T2 (app to app, time period one) and T2 versus T3 (app to web, time period two).<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>We enrolled 48 participants (median age\u00a0=\u00a056 [range 27\u201378] years). Eighteen participants (37.5%) were PWH and seven (14.6%) were carriers. On general health domain questions, we found almost perfect agreement, except for a question on the frequency of use of pain medication in the last 12 months [Kappa coefficient (<jats:italic>\u03ba<\/jats:italic>)\u00a0.72 and\u00a0.37 for time period one and two, respectively] and any use of pain medications (<jats:italic>\u03ba<\/jats:italic>\u00a0.75) for time period two. For haemophilia\u2010related questions, we found substantial to perfect agreement, except for the questions on the number of joint bleeds in the previous 6 months for time period one (<jats:italic>\u03ba<\/jats:italic>\u00a0.49) and the number of bleeds in the previous two weeks for time period two (<jats:italic>\u03ba<\/jats:italic>\u00a0.34).<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The results demonstrate the reliability of the PROBE app. The app can be used interchangeably with the paper and web platforms for PROBE administration.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hae.14969","type":"journal-article","created":{"date-parts":[[2024,3,5]],"date-time":"2024-03-05T04:44:32Z","timestamp":1709613872000},"page":"702-708","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Test\u2013retest reliability of a mobile application of the patient reported outcomes burdens and experiences (PROBE) study"],"prefix":"10.1111","volume":"30","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6859-6432","authenticated-orcid":false,"given":"Randall","family":"Curtis","sequence":"first","affiliation":[{"name":"Factor VIII Computing  Berkeley USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0932-4979","authenticated-orcid":false,"given":"Joanne","family":"Wu","sequence":"additional","affiliation":[{"name":"Sol Price School of Public Policy University of Southern California  Los Angeles USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3331-8766","authenticated-orcid":false,"given":"Alfonso","family":"Iorio","sequence":"additional","affiliation":[{"name":"Department of Medicine McMaster University  Hamilton ON Canada"},{"name":"Department of Clinical Epidemiology and Biostatistics McMaster University  Hamilton ON Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Neil","family":"Frick","sequence":"additional","affiliation":[{"name":"National Hemophilia Foundation  New York USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Nichol","sequence":"additional","affiliation":[{"name":"Sol Price School of Public Policy University of Southern California  Los Angeles USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Declan","family":"Noone","sequence":"additional","affiliation":[{"name":"Irish Haemophilia Society  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9780-6972","authenticated-orcid":false,"given":"Brian","family":"O'Mahony","sequence":"additional","affiliation":[{"name":"Irish Haemophilia Society  Dublin Ireland"},{"name":"Trinity College Dublin  Dublin Ireland"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5009-260X","authenticated-orcid":false,"given":"David","family":"Page","sequence":"additional","affiliation":[{"name":"Canadian Hemophilia Society  Montreal Canada"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jeffrey","family":"Stonebraker","sequence":"additional","affiliation":[{"name":"Poole College of Management North Carolina State University  Raleigh USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra","family":"Kucher","sequence":"additional","affiliation":[{"name":"Patient Outcomes Research Group Ltd  Washington District of Columbia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-1789-6635","authenticated-orcid":false,"given":"Elizabeth","family":"Clearfield","sequence":"additional","affiliation":[{"name":"Institute for Policy Development Ltd  Washington District of Columbia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0934-0680","authenticated-orcid":false,"given":"Mark W.","family":"Skinner","sequence":"additional","affiliation":[{"name":"Department of Clinical Epidemiology and Biostatistics McMaster University  Hamilton ON Canada"},{"name":"Institute for Policy Development Ltd  Washington District of Columbia USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Federico","family":"Germini","sequence":"additional","affiliation":[{"name":"Department of Medicine McMaster University  Hamilton ON Canada"},{"name":"Department of Clinical Epidemiology and Biostatistics McMaster University  Hamilton ON Canada"},{"name":"Clinical Epidemiology and Research Center (CERC) IRCCS Humanitas Research Hospital  Milan 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