Health following recovery from immune thrombotic thrombocytopenic purpura: the patient’s perspective
•A qualitative study of patients in remission from iTTP documented nearly universal occurrence of cognitive problems, fatigue, and anxiety.•These sequelae of iTTP caused problems with careers, social activities, family responsibilities, and marital relationships. [Display omitted] The impact of resi...
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| Veröffentlicht in: | Blood advances 2023-05, Vol.7 (9), p.1813-1822 |
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| creator | Kelley, Rachel A. Cheney, Marshall K. Martin, Clare M. Cataland, Spero Quick, Lauren B. Keller, San Vesely, Sara K. Llaneza, Amanda J. Khawandanah, Mohamad O. Journeycake, Janna M. Panepinto, Julie A. Terrell, Deirdra R. |
| description | •A qualitative study of patients in remission from iTTP documented nearly universal occurrence of cognitive problems, fatigue, and anxiety.•These sequelae of iTTP caused problems with careers, social activities, family responsibilities, and marital relationships.
[Display omitted]
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’s 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 ≥18 years, ADAMTS13 deficiency ( |
| doi_str_mv | 10.1182/bloodadvances.2022008342 |
| format | Article |
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[Display omitted]
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’s 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 ≥18 years, ADAMTS13 deficiency (<10% activity) at diagnosis or relapse, and in clinical remission (≥1 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 = 25; interviews, N = 19). The most important symptoms affecting the patients’ daily activities were cognitive issues, anxiety, depression, and fatigue. These symptoms affected patients’ 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.</description><identifier>ISSN: 2473-9529</identifier><identifier>EISSN: 2473-9537</identifier><identifier>DOI: 10.1182/bloodadvances.2022008342</identifier><identifier>PMID: 36287218</identifier><language>eng</language><publisher>United States: Elsevier Inc</publisher><subject>Activities of Daily Living ; Adolescent ; Focus Groups ; Health Services and Outcomes ; Humans ; Purpura, Thrombocytopenic, Idiopathic ; Purpura, Thrombotic Thrombocytopenic - diagnosis ; Purpura, Thrombotic Thrombocytopenic - therapy ; Thrombosis</subject><ispartof>Blood advances, 2023-05, Vol.7 (9), p.1813-1822</ispartof><rights>2023 The American Society of Hematology</rights><rights>Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0), permitting only noncommercial, nonderivative use with attribution.</rights><rights>Licensed under Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International (CC BY-NC-ND 4.0), permitting only noncommercial, nonderivative use with attribution. 2023 The American Society of Hematology</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c480t-7e03cf5e65e45889b9ac11a449aedf1c54100d4f66f8bdecc61cddeb6dfa53883</citedby><cites>FETCH-LOGICAL-c480t-7e03cf5e65e45889b9ac11a449aedf1c54100d4f66f8bdecc61cddeb6dfa53883</cites><orcidid>0000-0003-3448-0156 ; 0000-0003-0794-5851</orcidid></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10164827/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC10164827/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,727,780,784,864,885,27924,27925,53791,53793</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/36287218$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Kelley, Rachel A.</creatorcontrib><creatorcontrib>Cheney, Marshall K.</creatorcontrib><creatorcontrib>Martin, Clare M.</creatorcontrib><creatorcontrib>Cataland, Spero</creatorcontrib><creatorcontrib>Quick, Lauren B.</creatorcontrib><creatorcontrib>Keller, San</creatorcontrib><creatorcontrib>Vesely, Sara K.</creatorcontrib><creatorcontrib>Llaneza, Amanda J.</creatorcontrib><creatorcontrib>Khawandanah, Mohamad O.</creatorcontrib><creatorcontrib>Journeycake, Janna M.</creatorcontrib><creatorcontrib>Panepinto, Julie A.</creatorcontrib><creatorcontrib>Terrell, Deirdra R.</creatorcontrib><title>Health following recovery from immune thrombotic thrombocytopenic purpura: the patient’s perspective</title><title>Blood advances</title><addtitle>Blood Adv</addtitle><description>•A qualitative study of patients in remission from iTTP documented nearly universal occurrence of cognitive problems, fatigue, and anxiety.•These sequelae of iTTP caused problems with careers, social activities, family responsibilities, and marital relationships.
[Display omitted]
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’s 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 ≥18 years, ADAMTS13 deficiency (<10% activity) at diagnosis or relapse, and in clinical remission (≥1 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 = 25; interviews, N = 19). The most important symptoms affecting the patients’ daily activities were cognitive issues, anxiety, depression, and fatigue. These symptoms affected patients’ 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.</description><subject>Activities of Daily Living</subject><subject>Adolescent</subject><subject>Focus Groups</subject><subject>Health Services and Outcomes</subject><subject>Humans</subject><subject>Purpura, Thrombocytopenic, Idiopathic</subject><subject>Purpura, Thrombotic Thrombocytopenic - diagnosis</subject><subject>Purpura, Thrombotic Thrombocytopenic - therapy</subject><subject>Thrombosis</subject><issn>2473-9529</issn><issn>2473-9537</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2023</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNqFkcFu1DAQhi0EolXpK1Q5ctliO47jcEFQQYtUiQs9W8543DVK4mA7QXvjNfp6fZIabbvQE5Iljz3__DOaj5CK0XPGFH_XDyFYY1czAaZzTjmnVNWCvyDHXLT1pmvq9uUh5t0ROU3pB6WUtbJuOv6aHNWSq5YzdUzcFZohbysXhiH88tNtFRHCinFXuRjGyo_jMmGVt-XRh-zhKYRdDjNO5WNeYjnmfclgNZvsccr3v-9SNWNMM0L2K74hr5wZEp4-3ifk5svn7xdXm-tvl18vPl5vQCiaNy3SGlyDskHRKNX1nQHGjBCdQesYNIJRaoWT0qneIoBkYC320jrT1ErVJ-TD3nde-hEtlFGiGfQc_WjiTgfj9fPM5Lf6NqyaUSaF4m1xePvoEMPPBVPWo0-Aw2AmDEvSvOUd5YoqWaRqL4UYUoroDn0Y1X9Q6Weo9F9UpfTs3zkPhU9giuDTXoBlW6vHqBOUxQJaXwBlbYP_f5cHQZawlg</recordid><startdate>20230509</startdate><enddate>20230509</enddate><creator>Kelley, Rachel A.</creator><creator>Cheney, Marshall K.</creator><creator>Martin, Clare M.</creator><creator>Cataland, Spero</creator><creator>Quick, Lauren B.</creator><creator>Keller, San</creator><creator>Vesely, Sara K.</creator><creator>Llaneza, Amanda J.</creator><creator>Khawandanah, Mohamad O.</creator><creator>Journeycake, Janna M.</creator><creator>Panepinto, Julie A.</creator><creator>Terrell, Deirdra R.</creator><general>Elsevier Inc</general><general>The American Society of Hematology</general><scope>6I.</scope><scope>AAFTH</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope><orcidid>https://orcid.org/0000-0003-3448-0156</orcidid><orcidid>https://orcid.org/0000-0003-0794-5851</orcidid></search><sort><creationdate>20230509</creationdate><title>Health following recovery from immune thrombotic thrombocytopenic purpura: the patient’s perspective</title><author>Kelley, Rachel A. ; Cheney, Marshall K. ; Martin, Clare M. ; Cataland, Spero ; Quick, Lauren B. ; Keller, San ; Vesely, Sara K. ; Llaneza, Amanda J. ; Khawandanah, Mohamad O. ; Journeycake, Janna M. ; Panepinto, Julie A. ; Terrell, Deirdra R.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c480t-7e03cf5e65e45889b9ac11a449aedf1c54100d4f66f8bdecc61cddeb6dfa53883</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2023</creationdate><topic>Activities of Daily Living</topic><topic>Adolescent</topic><topic>Focus Groups</topic><topic>Health Services and Outcomes</topic><topic>Humans</topic><topic>Purpura, Thrombocytopenic, Idiopathic</topic><topic>Purpura, Thrombotic Thrombocytopenic - diagnosis</topic><topic>Purpura, Thrombotic Thrombocytopenic - therapy</topic><topic>Thrombosis</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Kelley, Rachel A.</creatorcontrib><creatorcontrib>Cheney, Marshall K.</creatorcontrib><creatorcontrib>Martin, Clare M.</creatorcontrib><creatorcontrib>Cataland, Spero</creatorcontrib><creatorcontrib>Quick, Lauren B.</creatorcontrib><creatorcontrib>Keller, San</creatorcontrib><creatorcontrib>Vesely, Sara K.</creatorcontrib><creatorcontrib>Llaneza, Amanda J.</creatorcontrib><creatorcontrib>Khawandanah, Mohamad O.</creatorcontrib><creatorcontrib>Journeycake, Janna M.</creatorcontrib><creatorcontrib>Panepinto, Julie A.</creatorcontrib><creatorcontrib>Terrell, Deirdra R.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Blood advances</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Kelley, Rachel A.</au><au>Cheney, Marshall K.</au><au>Martin, Clare M.</au><au>Cataland, Spero</au><au>Quick, Lauren B.</au><au>Keller, San</au><au>Vesely, Sara K.</au><au>Llaneza, Amanda J.</au><au>Khawandanah, Mohamad O.</au><au>Journeycake, Janna M.</au><au>Panepinto, Julie A.</au><au>Terrell, Deirdra R.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>Health following recovery from immune thrombotic thrombocytopenic purpura: the patient’s perspective</atitle><jtitle>Blood advances</jtitle><addtitle>Blood Adv</addtitle><date>2023-05-09</date><risdate>2023</risdate><volume>7</volume><issue>9</issue><spage>1813</spage><epage>1822</epage><pages>1813-1822</pages><issn>2473-9529</issn><eissn>2473-9537</eissn><abstract>•A qualitative study of patients in remission from iTTP documented nearly universal occurrence of cognitive problems, fatigue, and anxiety.•These sequelae of iTTP caused problems with careers, social activities, family responsibilities, and marital relationships.
[Display omitted]
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’s 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 ≥18 years, ADAMTS13 deficiency (<10% activity) at diagnosis or relapse, and in clinical remission (≥1 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 = 25; interviews, N = 19). The most important symptoms affecting the patients’ daily activities were cognitive issues, anxiety, depression, and fatigue. These symptoms affected patients’ 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.</abstract><cop>United States</cop><pub>Elsevier Inc</pub><pmid>36287218</pmid><doi>10.1182/bloodadvances.2022008342</doi><tpages>10</tpages><orcidid>https://orcid.org/0000-0003-3448-0156</orcidid><orcidid>https://orcid.org/0000-0003-0794-5851</orcidid><oa>free_for_read</oa></addata></record> |
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| source | MEDLINE; DOAJ Directory of Open Access Journals; EZB-FREE-00999 freely available EZB journals; PubMed Central; Alma/SFX Local Collection |
| subjects | Activities of Daily Living Adolescent Focus Groups Health Services and Outcomes Humans Purpura, Thrombocytopenic, Idiopathic Purpura, Thrombotic Thrombocytopenic - diagnosis Purpura, Thrombotic Thrombocytopenic - therapy Thrombosis |
| title | Health following recovery from immune thrombotic thrombocytopenic purpura: the patient’s perspective |
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