{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T18:54:19Z","timestamp":1782845659790,"version":"3.54.5"},"reference-count":20,"publisher":"JMIR Publications Inc.","issue":"7","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JMIR Form Res"],"abstract":"\n Background<\/jats:title>\n Cold agglutinin disease (CAD) is a rare disorder, affecting 15% of patients with autoimmune hemolytic anemia. Few studies have assessed CAD symptoms and their impact on daily life, but these studies did not address the patients\u2019 perspectives.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n The aims of this study were to increase the knowledge about CAD through a patient-centric survey and to gain a better understanding of the burden of this disease.<\/jats:p>\n <\/jats:sec>\n \n Methods<\/jats:title>\n We conducted an internet-based survey in September 2020 among American patients registered on the CAD Unraveled website and members of the Cold Agglutinin Disease Foundation.<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n A total of 50 respondents were included in this study. Totally, 90% (45\/50) of the patients reported having experienced fatigue. Fatigue was mainly reported on a daily basis, and approximately one-third of these patients (13\/45, 29%) said that their fatigue was constant throughout the day. It has also been shown that CAD has a great impact on patients\u2019 physical well-being, emotional well-being, social life, and household finances. The disease varies over time, with or without symptoms. A total of 88% (44\/50) of the patients reported previous episodes of the increased intensity or sensitivity of their CAD symptoms, with a mean of 4.5 (SD 5.4) episodes reported during the past year. More than half of the patients (27\/50, 54%) considered their disease to be moderate or severe, and 42% (21\/50) of the study group reported that their symptoms had worsened since the time of diagnosis.<\/jats:p>\n <\/jats:sec>\n \n Conclusions<\/jats:title>\n Our study has provided new data on CAD symptoms, particularly data on the importance and type of fatigue and the fluctuation of CAD symptoms.<\/jats:p>\n <\/jats:sec>","DOI":"10.2196\/34248","type":"journal-article","created":{"date-parts":[[2022,6,1]],"date-time":"2022-06-01T06:30:29Z","timestamp":1654065029000},"page":"e34248","source":"Crossref","is-referenced-by-count":11,"title":["The Burden of Cold Agglutinin Disease on Patients\u2019 Daily Life: Web-Based Cross-sectional Survey of 50 American Patients"],"prefix":"10.2196","volume":"6","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5054-8777","authenticated-orcid":false,"given":"Florence","family":"Joly","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0000-1770","authenticated-orcid":false,"given":"Lisa Anne","family":"Schmitt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-7354-9075","authenticated-orcid":false,"given":"Patricia Ann McGee","family":"Watson","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8414-5829","authenticated-orcid":false,"given":"Emilie","family":"Pain","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2603-5135","authenticated-orcid":false,"given":"Damien","family":"Testa","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1010","published-online":{"date-parts":[[2022,7,22]]},"reference":[{"key":"ref1","doi-asserted-by":"publisher","DOI":"10.1155\/2015\/363278"},{"key":"ref2","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2012.01.002"},{"key":"ref3","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-3083.2001.00960.x"},{"key":"ref4","doi-asserted-by":"publisher","DOI":"10.1016\/j.blre.2019.100648"},{"key":"ref5","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2019000476"},{"key":"ref6","doi-asserted-by":"publisher","DOI":"10.1111\/bjh.15109"},{"key":"ref7","doi-asserted-by":"publisher","DOI":"10.1182\/bloodadvances.2017004390"},{"key":"ref8","doi-asserted-by":"publisher","DOI":"10.1182\/blood.2020005674"},{"key":"ref9","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2013-02-474437"},{"key":"ref10","doi-asserted-by":"publisher","DOI":"10.1586\/17474086.2015.1073105"},{"issue":"4","key":"ref11","first-page":"460","volume":"91","author":"Berentsen, S","year":"2006","journal-title":"Haematologica"},{"key":"ref12","doi-asserted-by":"publisher","DOI":"10.1182\/blood-2020-136788"},{"key":"ref13","doi-asserted-by":"publisher","DOI":"10.3389\/fimmu.2020.00590"},{"key":"ref14","doi-asserted-by":"publisher","DOI":"10.1182\/asheducation-2016.1.226"},{"key":"ref15","doi-asserted-by":"publisher","DOI":"10.1002\/rth2.12333"},{"key":"ref16","doi-asserted-by":"publisher","DOI":"10.1002\/ajh.26196"},{"key":"ref17","doi-asserted-by":"publisher","DOI":"10.2147\/JBM.S177621"},{"key":"ref18","unstructured":"Cold Agglutinin DiseaseNational Organization for Rare Disorders2022-05-17https:\/\/rarediseases.org\/rare-diseases\/cold-aggluti nin-disease\/#:~:text=General%20Discussion,subtype%20of%20autoimmune%20hemolytic%20anemia"},{"key":"ref19","unstructured":"KeeterSMcGeeneyKCoverage Error in Internet SurveysPew Research Center20159222021-02-17https:\/\/www.pew research.org\/methods\/2015\/09\/22\/coverage-error-in-internet-surveys\/"},{"key":"ref20","doi-asserted-by":"publisher","DOI":"10.1016\/j.jval.2017.08.2153"}],"container-title":["JMIR Formative Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/formative.jmir.org\/2022\/7\/e34248","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T17:54:01Z","timestamp":1782842041000},"score":1,"resource":{"primary":{"URL":"https:\/\/formative.jmir.org\/2022\/7\/e34248"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,7,22]]},"references-count":20,"journal-issue":{"issue":"7","published-online":{"date-parts":[[2022]]}},"URL":"https:\/\/doi.org\/10.2196\/34248","relation":{"has-preprint":[{"id-type":"doi","id":"10.2196\/preprints.34248","asserted-by":"object"}]},"ISSN":["2561-326X"],"issn-type":[{"value":"2561-326X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,7,22]]}}}