The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients
Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess sym...
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| Veröffentlicht in: | Blood 2011-07, Vol.118 (2), p.401-408 |
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| creator | Scherber, Robyn Dueck, Amylou C. Johansson, Peter Barbui, Tiziano Barosi, Giovanni Vannucchi, Alessandro M. Passamonti, Francesco Andreasson, Bjorn Ferarri, Maria L. Rambaldi, Alessandro Samuelsson, Jan Birgegard, Gunnar Tefferi, Ayalew Harrison, Claire N. Radia, Deepti Mesa, Ruben A. |
| description | Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English [25%], Italian [46%], and Swedish [28%]) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally. |
| doi_str_mv | 10.1182/blood-2011-01-328955 |
| format | Article |
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We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English [25%], Italian [46%], and Swedish [28%]) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally.</description><identifier>ISSN: 0006-4971</identifier><identifier>ISSN: 1528-0020</identifier><identifier>EISSN: 1528-0020</identifier><identifier>DOI: 10.1182/blood-2011-01-328955</identifier><identifier>PMID: 21536863</identifier><language>eng</language><publisher>Washington, DC: Elsevier Inc</publisher><subject>Adult ; Aged ; Aged, 80 and over ; Biological and medical sciences ; Bone Marrow Neoplasms - diagnosis ; Bone Marrow Neoplasms - epidemiology ; Cohort Studies ; Female ; Health Surveys ; Hematologic and hematopoietic diseases ; Humans ; Internationality ; Italy - epidemiology ; Leukemias. Malignant lymphomas. Malignant reticulosis. Myelofibrosis ; Male ; Medical sciences ; MEDICIN ; MEDICINE ; Middle Aged ; Myeloproliferative Disorders - diagnosis ; Myeloproliferative Disorders - epidemiology ; Quality of Life ; Records ; Reproducibility of Results ; Surveys and Questionnaires ; Sweden - epidemiology ; United States - epidemiology</subject><ispartof>Blood, 2011-07, Vol.118 (2), p.401-408</ispartof><rights>2011 American Society of Hematology</rights><rights>2015 INIST-CNRS</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><citedby>FETCH-LOGICAL-c578t-bbd471534e09186bc50646f725688eaa6d09fed435237efb0a3af78a71f79f433</citedby><cites>FETCH-LOGICAL-c578t-bbd471534e09186bc50646f725688eaa6d09fed435237efb0a3af78a71f79f433</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>230,314,776,780,881,27901,27902</link.rule.ids><backlink>$$Uhttp://pascal-francis.inist.fr/vibad/index.php?action=getRecordDetail&idt=24347159$$DView record in Pascal Francis$$Hfree_for_read</backlink><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/21536863$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink><backlink>$$Uhttps://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-156618$$DView record from Swedish Publication Index$$Hfree_for_read</backlink><backlink>$$Uhttp://kipublications.ki.se/Default.aspx?queryparsed=id:122911418$$DView record from Swedish Publication Index$$Hfree_for_read</backlink></links><search><creatorcontrib>Scherber, Robyn</creatorcontrib><creatorcontrib>Dueck, Amylou C.</creatorcontrib><creatorcontrib>Johansson, Peter</creatorcontrib><creatorcontrib>Barbui, Tiziano</creatorcontrib><creatorcontrib>Barosi, Giovanni</creatorcontrib><creatorcontrib>Vannucchi, Alessandro M.</creatorcontrib><creatorcontrib>Passamonti, Francesco</creatorcontrib><creatorcontrib>Andreasson, Bjorn</creatorcontrib><creatorcontrib>Ferarri, Maria L.</creatorcontrib><creatorcontrib>Rambaldi, Alessandro</creatorcontrib><creatorcontrib>Samuelsson, Jan</creatorcontrib><creatorcontrib>Birgegard, Gunnar</creatorcontrib><creatorcontrib>Tefferi, Ayalew</creatorcontrib><creatorcontrib>Harrison, Claire N.</creatorcontrib><creatorcontrib>Radia, Deepti</creatorcontrib><creatorcontrib>Mesa, Ruben A.</creatorcontrib><title>The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients</title><title>Blood</title><addtitle>Blood</addtitle><description>Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English [25%], Italian [46%], and Swedish [28%]) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally.</description><subject>Adult</subject><subject>Aged</subject><subject>Aged, 80 and over</subject><subject>Biological and medical sciences</subject><subject>Bone Marrow Neoplasms - diagnosis</subject><subject>Bone Marrow Neoplasms - epidemiology</subject><subject>Cohort Studies</subject><subject>Female</subject><subject>Health Surveys</subject><subject>Hematologic and hematopoietic diseases</subject><subject>Humans</subject><subject>Internationality</subject><subject>Italy - epidemiology</subject><subject>Leukemias. Malignant lymphomas. Malignant reticulosis. Myelofibrosis</subject><subject>Male</subject><subject>Medical sciences</subject><subject>MEDICIN</subject><subject>MEDICINE</subject><subject>Middle Aged</subject><subject>Myeloproliferative Disorders - diagnosis</subject><subject>Myeloproliferative Disorders - epidemiology</subject><subject>Quality of Life</subject><subject>Records</subject><subject>Reproducibility of Results</subject><subject>Surveys and Questionnaires</subject><subject>Sweden - epidemiology</subject><subject>United States - epidemiology</subject><issn>0006-4971</issn><issn>1528-0020</issn><issn>1528-0020</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2011</creationdate><recordtype>article</recordtype><sourceid>EIF</sourceid><recordid>eNp9kcFu1DAURSMEotPCHyDkDaJIBOzYjh0WSKPCQKW2VHTo1nKSZzB14mAnRfMR_DOeyVBWsLLlnHcd35NlTwh-RYgsXtfO-zYvMCE5JjktZMX5vWxBeCFzjAt8P1tgjMucVYIcZIcxfseYMFrwh9lBQTgtZUkX2a_1N0DnG3B-CN5ZA0GP9hbQBfjB6dihq003jL5Dyxghxg76Ea186NDx-eVFfrVcvXiDTvsRQp_mfK8dugw-DtDsUq61s-3uA9J9iz6Ds7q2zo4btA42wbZHDBdoSExKjo-yB0a7CI_361H2ZfV-ffIxP_v04fRkeZY3XMgxr-uWifQEBrgisqwbjktWGlHwUkrQumxxZaBllBdUgKmxptoIqQUxojKM0qMsn3PjTximWg3BdjpslNdW7Y9u0g4UZ4xLkfiX_-Tf2eul8uGrmiZFeFkSmfDnM546_TFBHFVnYwPO6R78FJUUgmEh6DaYzWSTWosBzF00wWqrWe00q61mhYmaNaexp_sLprqD9m7oj9cEPNsDOjbamaD7xsa_HKPbAqvEvZ05SG3fWggqNslEA60NyaFqvf3_n_wGSNfIBg</recordid><startdate>20110714</startdate><enddate>20110714</enddate><creator>Scherber, Robyn</creator><creator>Dueck, Amylou C.</creator><creator>Johansson, Peter</creator><creator>Barbui, Tiziano</creator><creator>Barosi, Giovanni</creator><creator>Vannucchi, Alessandro M.</creator><creator>Passamonti, Francesco</creator><creator>Andreasson, Bjorn</creator><creator>Ferarri, Maria L.</creator><creator>Rambaldi, Alessandro</creator><creator>Samuelsson, Jan</creator><creator>Birgegard, Gunnar</creator><creator>Tefferi, Ayalew</creator><creator>Harrison, Claire N.</creator><creator>Radia, Deepti</creator><creator>Mesa, Ruben A.</creator><general>Elsevier Inc</general><general>Americain Society of Hematology</general><scope>6I.</scope><scope>AAFTH</scope><scope>IQODW</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>ADTPV</scope><scope>AOWAS</scope><scope>DF2</scope></search><sort><creationdate>20110714</creationdate><title>The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients</title><author>Scherber, Robyn ; Dueck, Amylou C. ; Johansson, Peter ; Barbui, Tiziano ; Barosi, Giovanni ; Vannucchi, Alessandro M. ; Passamonti, Francesco ; Andreasson, Bjorn ; Ferarri, Maria L. ; Rambaldi, Alessandro ; Samuelsson, Jan ; Birgegard, Gunnar ; Tefferi, Ayalew ; Harrison, Claire N. ; Radia, Deepti ; Mesa, Ruben A.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c578t-bbd471534e09186bc50646f725688eaa6d09fed435237efb0a3af78a71f79f433</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2011</creationdate><topic>Adult</topic><topic>Aged</topic><topic>Aged, 80 and over</topic><topic>Biological and medical sciences</topic><topic>Bone Marrow Neoplasms - diagnosis</topic><topic>Bone Marrow Neoplasms - epidemiology</topic><topic>Cohort Studies</topic><topic>Female</topic><topic>Health Surveys</topic><topic>Hematologic and hematopoietic diseases</topic><topic>Humans</topic><topic>Internationality</topic><topic>Italy - epidemiology</topic><topic>Leukemias. Malignant lymphomas. Malignant reticulosis. Myelofibrosis</topic><topic>Male</topic><topic>Medical sciences</topic><topic>MEDICIN</topic><topic>MEDICINE</topic><topic>Middle Aged</topic><topic>Myeloproliferative Disorders - diagnosis</topic><topic>Myeloproliferative Disorders - epidemiology</topic><topic>Quality of Life</topic><topic>Records</topic><topic>Reproducibility of Results</topic><topic>Surveys and Questionnaires</topic><topic>Sweden - epidemiology</topic><topic>United States - epidemiology</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Scherber, Robyn</creatorcontrib><creatorcontrib>Dueck, Amylou C.</creatorcontrib><creatorcontrib>Johansson, Peter</creatorcontrib><creatorcontrib>Barbui, Tiziano</creatorcontrib><creatorcontrib>Barosi, Giovanni</creatorcontrib><creatorcontrib>Vannucchi, Alessandro M.</creatorcontrib><creatorcontrib>Passamonti, Francesco</creatorcontrib><creatorcontrib>Andreasson, Bjorn</creatorcontrib><creatorcontrib>Ferarri, Maria L.</creatorcontrib><creatorcontrib>Rambaldi, Alessandro</creatorcontrib><creatorcontrib>Samuelsson, Jan</creatorcontrib><creatorcontrib>Birgegard, Gunnar</creatorcontrib><creatorcontrib>Tefferi, Ayalew</creatorcontrib><creatorcontrib>Harrison, Claire N.</creatorcontrib><creatorcontrib>Radia, Deepti</creatorcontrib><creatorcontrib>Mesa, Ruben A.</creatorcontrib><collection>ScienceDirect Open Access Titles</collection><collection>Elsevier:ScienceDirect:Open Access</collection><collection>Pascal-Francis</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>SwePub</collection><collection>SwePub Articles</collection><collection>SWEPUB Uppsala universitet</collection><jtitle>Blood</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Scherber, Robyn</au><au>Dueck, Amylou C.</au><au>Johansson, Peter</au><au>Barbui, Tiziano</au><au>Barosi, Giovanni</au><au>Vannucchi, Alessandro M.</au><au>Passamonti, Francesco</au><au>Andreasson, Bjorn</au><au>Ferarri, Maria L.</au><au>Rambaldi, Alessandro</au><au>Samuelsson, Jan</au><au>Birgegard, Gunnar</au><au>Tefferi, Ayalew</au><au>Harrison, Claire N.</au><au>Radia, Deepti</au><au>Mesa, Ruben A.</au><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients</atitle><jtitle>Blood</jtitle><addtitle>Blood</addtitle><date>2011-07-14</date><risdate>2011</risdate><volume>118</volume><issue>2</issue><spage>401</spage><epage>408</epage><pages>401-408</pages><issn>0006-4971</issn><issn>1528-0020</issn><eissn>1528-0020</eissn><abstract>Symptomatic burden in myeloproliferative neoplasms is present in most patients and compromises quality of life. We sought to validate a broadly applicable 18-item instrument (Myeloproliferative Neoplasm Symptom Assessment Form [MPN-SAF], coadministered with the Brief Fatigue Inventory) to assess symptoms of myelofibrosis, essential thrombocythemia, and polycythemia vera among prospective cohorts in the United States, Sweden, and Italy. A total of 402 MPN-SAF surveys were administered (English [25%], Italian [46%], and Swedish [28%]) in 161 patients with essential thrombocythemia, 145 patients with polycythemia vera, and 96 patients with myelofibrosis. Responses among the 3 administered languages showed great consistency after controlling for MPN subtype. Strong correlations existed between individual items and key symptomatic elements represented on both the MPN-SAF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30. Enrolling physicians' blinded opinion of patient symptoms (6 symptoms assessed) were highly correlated with corresponding patients' responses. Serial administration of the English MPN-SAF among 53 patients showed that most MPN-SAF items are well correlated (r > 0.5, P < .001) and highly reproducible (intraclass correlation coefficient > 0.7). The MPN-SAF is a comprehensive and reliable instrument that is available in multiple languages to evaluate symptoms associated with all types of MPNs in clinical trials globally.</abstract><cop>Washington, DC</cop><pub>Elsevier Inc</pub><pmid>21536863</pmid><doi>10.1182/blood-2011-01-328955</doi><tpages>8</tpages><oa>free_for_read</oa></addata></record> |
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| subjects | Adult Aged Aged, 80 and over Biological and medical sciences Bone Marrow Neoplasms - diagnosis Bone Marrow Neoplasms - epidemiology Cohort Studies Female Health Surveys Hematologic and hematopoietic diseases Humans Internationality Italy - epidemiology Leukemias. Malignant lymphomas. Malignant reticulosis. Myelofibrosis Male Medical sciences MEDICIN MEDICINE Middle Aged Myeloproliferative Disorders - diagnosis Myeloproliferative Disorders - epidemiology Quality of Life Records Reproducibility of Results Surveys and Questionnaires Sweden - epidemiology United States - epidemiology |
| title | The Myeloproliferative Neoplasm Symptom Assessment Form (MPN-SAF): International Prospective Validation and Reliability Trial in 402 patients |
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