{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,16]],"date-time":"2026-06-16T19:31:47Z","timestamp":1781638307586,"version":"3.54.5"},"reference-count":27,"publisher":"American Society of Hematology","issue":"9","content-domain":{"domain":["ashpublications.org"],"crossmark-restriction":true},"short-container-title":[],"published-print":{"date-parts":[[2023,5,9]]},"abstract":"<jats:title>Abstract<\/jats:title>\n               <jats:p>The impact of residual symptoms following recovery from immune-mediated thrombotic thrombocytopenic purpura (iTTP) on activities of daily living during remission is not routinely discussed or evaluated by hematologists. This study used qualitative methodology to understand 3 issues from the patient\u2019s perspective: the most important symptoms during remission, the impact of these symptoms on their daily activities, and the effectiveness of communication with hematologists. Oklahoma and Ohio patients participated in either focus groups or individual interviews. Eligibility included age \u226518 years, ADAMTS13 deficiency (&amp;lt;10% activity) at diagnosis or relapse, and in clinical remission (\u22651 year from episode). A nonprobabilistic purposive sampling approach was used. The most important symptoms were defined as symptoms mentioned across all 7 focus groups. The interviews supplemented focus group data. The analysis focused on describing the impact of symptoms and barriers to communicating with hematologists. A total of 44 patients participated (focus groups, N\u00a0= 25; interviews, N\u00a0= 19). The most important symptoms affecting the patients\u2019 daily activities were cognitive issues, anxiety, depression, and fatigue. These symptoms affected patients\u2019 ability to return to their previous level of functioning and created difficulties in relationships. A key communication barrier with their hematologists was forgetting to mention these symptoms. Although hematologists pronounce patients as recovered, iTTP remains a life-changing event. Patients often did not return to their previous functioning; relationships and careers were affected. However, patients may forget to discuss these concerns with their hematologist. To improve remission care, hematologists should incorporate patient-reported outcome measures evaluating these symptoms in remission visits.<\/jats:p>","DOI":"10.1182\/bloodadvances.2022008342","type":"journal-article","created":{"date-parts":[[2022,10,26]],"date-time":"2022-10-26T15:07:21Z","timestamp":1666796841000},"page":"1813-1822","update-policy":"https:\/\/doi.org\/10.1182\/blood.2019cm0000","source":"Crossref","is-referenced-by-count":10,"title":["Health following recovery from immune thrombotic thrombocytopenic purpura: the patient\u2019s perspective"],"prefix":"10.1182","volume":"7","author":[{"given":"Rachel A.","family":"Kelley","sequence":"first","affiliation":[{"name":"1Department of Biostatistics and Epidemiology, Hudson College of Public Health, The University of Oklahoma Health Sciences Center, Oklahoma City, OK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marshall K.","family":"Cheney","sequence":"additional","affiliation":[{"name":"2Department of Health and Exercise Science, The University of Oklahoma, Norman, OK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Clare M.","family":"Martin","sequence":"additional","affiliation":[{"name":"3United States Thrombotic Microangiopathy Consortium, Columbus, OH"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Spero","family":"Cataland","sequence":"additional","affiliation":[{"name":"4Division of Hematology, Department of Internal Medicine, The Ohio State University, Columbus, OH"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lauren B.","family":"Quick","sequence":"additional","affiliation":[{"name":"1Department of Biostatistics and Epidemiology, Hudson College of Public Health, The University of Oklahoma Health Sciences Center, Oklahoma City, OK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"San","family":"Keller","sequence":"additional","affiliation":[{"name":"5American Institutes for Research, Chapel Hill, 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