{"id":"https://openalex.org/W3136036102","doi":"https://doi.org/10.1080/10428194.2021.1901096","title":"Myeloproliferative neoplasm questionnaire: assessing patient disease knowledge in the modern digital information era","display_name":"Myeloproliferative neoplasm questionnaire: assessing patient disease knowledge in the modern digital information era","publication_year":2021,"publication_date":"2021-03-22","ids":{"openalex":"https://openalex.org/W3136036102","doi":"https://doi.org/10.1080/10428194.2021.1901096","mag":"3136036102","pmid":"https://pubmed.ncbi.nlm.nih.gov/33749512","pmcid":"https://www.ncbi.nlm.nih.gov/pmc/articles/9938727"},"language":"en","primary_location":{"id":"doi:10.1080/10428194.2021.1901096","doi":"https://doi.org/10.1080/10428194.2021.1901096","is_oa":false,"landing_page_url":"https://doi.org/10.1080/10428194.2021.1901096","pdf_url":null,"source":{"id":"https://openalex.org/S27064115","display_name":"Leukemia & lymphoma/Leukemia and lymphoma","issn_l":"1026-8022","issn":["1026-8022","1029-2403","1042-8194"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320547","host_organization_name":"Taylor & Francis","host_organization_lineage":["https://openalex.org/P4310320547","https://openalex.org/P4310320449"],"host_organization_lineage_names":["Taylor & Francis","Informa"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Leukemia &amp; Lymphoma","raw_type":"journal-article"},"volume":null,"type":"article","indexed_in":["crossref","pubmed"],"open_access":{"is_oa":true,"oa_status":"green","oa_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9938727","any_repository_has_fulltext":true},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5088307376","display_name":"Naveen Pemmaraju","orcid":"https://orcid.org/0000-0002-1670-6513","observed_orcids":["https://orcid.org/0000-0002-1670-6513"]},"institutions":[{"id":"https://openalex.org/I1343551460","display_name":"The University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343551460"]}],"countries":["US"],"is_corresponding":true,"raw_author_name":"Naveen Pemmaraju","raw_affiliation_strings":["The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA"],"raw_orcid":"https://orcid.org/0000-0002-1670-6513","affiliations":[{"raw_affiliation_string":"The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA","institution_ids":["https://openalex.org/I1343551460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5062684149","display_name":"Nathaniel R. Wilson","orcid":"https://orcid.org/0000-0002-9123-1781","observed_orcids":["https://orcid.org/0000-0002-9123-1781"]},"institutions":[{"id":"https://openalex.org/I919571938","display_name":"The University of Texas Health Science Center at Houston","ror":"https://ror.org/03gds6c39","country_code":"US","type":"education","lineage":["https://openalex.org/I919571938"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Nathaniel R. Wilson","raw_affiliation_strings":["The University of Texas Health Science Center at Houston, Houston, TX, USA"],"raw_orcid":"https://orcid.org/0000-0002-9123-1781","affiliations":[{"raw_affiliation_string":"The University of Texas Health Science Center at Houston, Houston, TX, USA","institution_ids":["https://openalex.org/I919571938"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5060311516","display_name":"Theresa Clementi Doan","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Theresa Clementi Doan","raw_affiliation_strings":["Patient Power, LLC, Bellevue, WA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Patient Power, LLC, Bellevue, WA, USA","institution_ids":[]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5088821817","display_name":"Wei Qiao","orcid":"https://orcid.org/0000-0002-0922-0726","observed_orcids":["https://orcid.org/0000-0002-0922-0726"]},"institutions":[{"id":"https://openalex.org/I1343551460","display_name":"The University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343551460"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Wei Qiao","raw_affiliation_strings":["The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA","institution_ids":["https://openalex.org/I1343551460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5081496786","display_name":"Susan K. Peterson","orcid":"https://orcid.org/0000-0003-4793-1913","observed_orcids":["https://orcid.org/0000-0003-4793-1913"]},"institutions":[{"id":"https://openalex.org/I1343551460","display_name":"The University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343551460"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Susan K. Peterson","raw_affiliation_strings":["The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA","institution_ids":["https://openalex.org/I1343551460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5032449333","display_name":"Vicky Zoeller","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I1343551460","display_name":"The University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343551460"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Vicky Zoeller","raw_affiliation_strings":["The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA","institution_ids":["https://openalex.org/I1343551460"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5091216308","display_name":"Andrew Schorr","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Andrew Schorr","raw_affiliation_strings":["Patient Power, LLC, Bellevue, WA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Patient Power, LLC, Bellevue, WA, USA","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5085521139","display_name":"Sr\u0111an Verstov\u0161ek","orcid":"https://orcid.org/0000-0002-6912-8569","observed_orcids":["https://orcid.org/0000-0002-6912-8569"]},"institutions":[{"id":"https://openalex.org/I1343551460","display_name":"The University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1343551460"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Srdan Verstovsek","raw_affiliation_strings":["The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA"],"raw_orcid":"https://orcid.org/0000-0002-6912-8569","affiliations":[{"raw_affiliation_string":"The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA","institution_ids":["https://openalex.org/I1343551460"]}]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":2,"corresponding_author_ids":["https://openalex.org/A5088307376"],"corresponding_institution_ids":["https://openalex.org/I1343551460"],"apc_list":null,"apc_paid":null,"fwci":1.8692,"has_fulltext":false,"cited_by_count":8,"citation_normalized_percentile":{"value":0.84372616,"is_in_top_1_percent":false,"is_in_top_10_percent":false},"cited_by_percentile_year":{"min":92,"max":96},"biblio":{"volume":"62","issue":"9","first_page":"2253","last_page":"2260"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10737","display_name":"Health Literacy and Information Accessibility","score":0.7318999767303467,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},"topics":[{"id":"https://openalex.org/T10737","display_name":"Health Literacy and Information Accessibility","score":0.7318999767303467,"subfield":{"id":"https://openalex.org/subfields/3600","display_name":"General Health Professions"},"field":{"id":"https://openalex.org/fields/36","display_name":"Health Professions"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}},{"id":"https://openalex.org/T12027","display_name":"Social Media in Health Education","score":0.2222999930381775,"subfield":{"id":"https://openalex.org/subfields/3306","display_name":"Health"},"field":{"id":"https://openalex.org/fields/33","display_name":"Social Sciences"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11628","display_name":"Myeloproliferative Neoplasms: Diagnosis and Treatment","score":0.03579999879002571,"subfield":{"id":"https://openalex.org/subfields/2716","display_name":"Genetics (clinical)"},"field":{"id":"https://openalex.org/fields/27","display_name":"Medicine"},"domain":{"id":"https://openalex.org/domains/4","display_name":"Health Sciences"}}],"keywords":[{"id":"https://openalex.org/keywords/myeloproliferative-neoplasms","display_name":"myeloproliferative neoplasms","score":1.0},{"id":"https://openalex.org/keywords/patient-knowledge","display_name":"patient knowledge","score":0.7509999871253967},{"id":"https://openalex.org/keywords/social-media-use","display_name":"social media use","score":0.6880000233650208},{"id":"https://openalex.org/keywords/online-health-information-seeking","display_name":"online health information seeking","score":0.8259999752044678},{"id":"https://openalex.org/keywords/prognostic-stratification","display_name":"prognostic stratification","score":0.8610000014305115},{"id":"https://openalex.org/keywords/mutation","display_name":"genetic mutations","score":0.6439999938011169},{"id":"https://openalex.org/keywords/digital-health-data","display_name":"digital health data","score":0.4519999921321869}],"concepts":[{"id":"https://openalex.org/C518677369","wikidata":"https://www.wikidata.org/wiki/Q202833","display_name":"Social media","level":2,"score":0.6803688406944275},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.5763624310493469},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.5634745955467224},{"id":"https://openalex.org/C2781107747","wikidata":"https://www.wikidata.org/wiki/Q1898104","display_name":"Myeloproliferative neoplasm","level":4,"score":0.4795401096343994},{"id":"https://openalex.org/C110875604","wikidata":"https://www.wikidata.org/wiki/Q75","display_name":"The Internet","level":2,"score":0.4692309498786926},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.44506925344467163},{"id":"https://openalex.org/C108827166","wikidata":"https://www.wikidata.org/wiki/Q175975","display_name":"Internet privacy","level":1,"score":0.3435029983520508},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.2656720280647278},{"id":"https://openalex.org/C136764020","wikidata":"https://www.wikidata.org/wiki/Q466","display_name":"World Wide Web","level":1,"score":0.21095624566078186},{"id":"https://openalex.org/C41008148","wikidata":"https://www.wikidata.org/wiki/Q21198","display_name":"Computer science","level":0,"score":0.13128966093063354},{"id":"https://openalex.org/C2780007613","wikidata":"https://www.wikidata.org/wiki/Q546523","display_name":"Bone marrow","level":2,"score":0.0},{"id":"https://openalex.org/C2780076729","wikidata":"https://www.wikidata.org/wiki/Q1752571","display_name":"Myelofibrosis","level":3,"score":0.0}],"mesh":[{"descriptor_ui":"D006801","descriptor_name":"Humans","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D009196","descriptor_name":"Myeloproliferative Disorders","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D009196","descriptor_name":"Myeloproliferative Disorders","qualifier_ui":"Q000235","qualifier_name":"genetics","is_major_topic":true},{"descriptor_ui":"D009369","descriptor_name":"Neoplasms","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true},{"descriptor_ui":"D011795","descriptor_name":"Surveys and Questionnaires","qualifier_ui":null,"qualifier_name":null,"is_major_topic":false},{"descriptor_ui":"D019337","descriptor_name":"Hematologic Neoplasms","qualifier_ui":"Q000175","qualifier_name":"diagnosis","is_major_topic":true},{"descriptor_ui":"D019337","descriptor_name":"Hematologic Neoplasms","qualifier_ui":"Q000628","qualifier_name":"therapy","is_major_topic":true},{"descriptor_ui":"D061108","descriptor_name":"Social Media","qualifier_ui":null,"qualifier_name":null,"is_major_topic":true}],"locations_count":3,"locations":[{"id":"doi:10.1080/10428194.2021.1901096","doi":"https://doi.org/10.1080/10428194.2021.1901096","is_oa":false,"landing_page_url":"https://doi.org/10.1080/10428194.2021.1901096","pdf_url":null,"source":{"id":"https://openalex.org/S27064115","display_name":"Leukemia & lymphoma/Leukemia and lymphoma","issn_l":"1026-8022","issn":["1026-8022","1029-2403","1042-8194"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["anvur-scientific","cwts-core","dongbi-c","doyens","jufo-1","ki-jl-1","medline","norway-1","poland-70","russia-white-list-2","vabb-shw"],"host_organization":"https://openalex.org/P4310320547","host_organization_name":"Taylor & Francis","host_organization_lineage":["https://openalex.org/P4310320547","https://openalex.org/P4310320449"],"host_organization_lineage_names":["Taylor & Francis","Informa"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Leukemia &amp; Lymphoma","raw_type":"journal-article"},{"id":"pmid:33749512","doi":null,"is_oa":false,"landing_page_url":"https://pubmed.ncbi.nlm.nih.gov/33749512","pdf_url":null,"source":{"id":"https://openalex.org/S4306525036","display_name":"PubMed","issn_l":null,"issn":null,"is_oa":false,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Leukemia & lymphoma","raw_type":"Journal Article"},{"id":"pmh:oai:pubmedcentral.nih.gov:9938727","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9938727","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"Leuk Lymphoma","raw_type":"Text"}],"best_oa_location":{"id":"pmh:oai:pubmedcentral.nih.gov:9938727","doi":null,"is_oa":true,"landing_page_url":"https://www.ncbi.nlm.nih.gov/pmc/articles/9938727","pdf_url":null,"source":{"id":"https://openalex.org/S2764455111","display_name":"PubMed Central","issn_l":null,"issn":null,"is_oa":true,"is_in_doaj":false,"is_core":false,"listed_in":[],"host_organization":"https://openalex.org/I1299303238","host_organization_name":"National Institutes of Health","host_organization_lineage":["https://openalex.org/I1299303238"],"host_organization_lineage_names":[],"type":"repository"},"license":null,"license_id":null,"version":"acceptedVersion","is_accepted":true,"is_published":false,"raw_source_name":"Leuk Lymphoma","raw_type":"Text"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","display_name":"Good health and well-being","score":0.9537000060081482}],"study_designs":[{"id":"https://openalex.org/study-designs/observational-study","display_name":"Observational Study"}],"awards":[{"id":"https://openalex.org/G9000878657","display_name":"Cancer Center Support Grant","funder_award_id":"P30CA016672","funder_id":"https://openalex.org/F4320337351","funder_display_name":"National Cancer Institute"}],"funders":[{"id":"https://openalex.org/F4320316571","display_name":"SagerStrong Foundation","ror":"https://ror.org/04aqznk06"},{"id":"https://openalex.org/F4320332521","display_name":"University of Texas MD Anderson Cancer Center","ror":"https://ror.org/04twxam07"},{"id":"https://openalex.org/F4320337351","display_name":"National Cancer Institute","ror":"https://ror.org/040gcmg81"}],"has_content":{"grobid_xml":false,"pdf":false},"content_urls":null,"referenced_works_count":35,"referenced_works":["https://openalex.org/W14691331","https://openalex.org/W1001750064","https://openalex.org/W1210836019","https://openalex.org/W1935594566","https://openalex.org/W1944062703","https://openalex.org/W2011934648","https://openalex.org/W2030356048","https://openalex.org/W2040192752","https://openalex.org/W2045831130","https://openalex.org/W2123189323","https://openalex.org/W2166270808","https://openalex.org/W2287857102","https://openalex.org/W2339658711","https://openalex.org/W2415600982","https://openalex.org/W2482129219","https://openalex.org/W2597213291","https://openalex.org/W2744846745","https://openalex.org/W2766413477","https://openalex.org/W2767073213","https://openalex.org/W2790003237","https://openalex.org/W2793344857","https://openalex.org/W2803775299","https://openalex.org/W2907763287","https://openalex.org/W2921129431","https://openalex.org/W2946589974","https://openalex.org/W2948883739","https://openalex.org/W2950500026","https://openalex.org/W3022796443","https://openalex.org/W3024397180","https://openalex.org/W3036451283","https://openalex.org/W3047530041","https://openalex.org/W3087635905","https://openalex.org/W3088297778","https://openalex.org/W3096567215","https://openalex.org/W3109179943"],"related_works":["https://openalex.org/W2988746454","https://openalex.org/W3096136545","https://openalex.org/W323655611","https://openalex.org/W2482129219","https://openalex.org/W4388197474","https://openalex.org/W2013365029","https://openalex.org/W2896212749","https://openalex.org/W2399733579","https://openalex.org/W3217255893","https://openalex.org/W2886222205"],"abstract_inverted_index":{"There":[0],"is":[1],"growing":[2],"Internet":[3],"and":[4,32,104,146],"social":[5,99,124],"media":[6,100],"use":[7,33],"among":[8],"patients":[9,120,149],"with":[10,150],"rare":[11],"blood":[12],"cancers,":[13],"notably":[14],"myeloproliferative":[15],"neoplasms":[16],"(MPNs).":[17],"A":[18],"38-item":[19],"online":[20,35,64,141],"questionnaire":[21],"was":[22],"developed":[23],"to":[24,76,136,143],"assess":[25],"patients\u2019":[26,88],"(n":[27],"=":[28],"983)":[29],"disease":[30,90],"understanding":[31],"of":[34,44,55,140],"resources":[36,65],"regarding":[37],"MPN.":[38,80,151],"Many":[39],"responders":[40],"(74%)":[41],"reported":[42,62],"unawareness":[43],"additional":[45],"mutations":[46],"beyond":[47],"their":[48,56,112],"primary":[49],"molecular":[50],"marker(s);":[51],"32%":[52],"were":[53],"unsure":[54],"prognostic":[57],"risk":[58],"stratification.":[59],"Additionally,":[60],"89%":[61],"using":[63],"(Facebook":[66],"(61%);":[67],"Google/Google+":[68],"(42%);":[69],"YouTube":[70],"(34%);":[71],"blogs":[72],"(26%);":[73],"Twitter":[74,110],"(5%))":[75],"seek":[77],"information":[78],"about":[79],"Despite":[81],"this,":[82],"results":[83],"showed":[84],"many":[85],"gaps":[86],"in":[87,98,131],"basic":[89],"knowledge.":[91],"Our":[92],"findings":[93],"suggest":[94],"an":[95],"important":[96],"difference":[97],"habits":[101],"between":[102],"physicians":[103,106],"patients:":[105],"are":[107],"rapidly":[108],"adopting":[109],"as":[111],"preferred":[113],"medium":[114],"for":[115,148],"sharing":[116],"medical":[117],"knowledge;":[118],"however,":[119],"often":[121],"prefer":[122],"other":[123],"mediums.":[125],"Educational":[126],"campaigns":[127],"should":[128],"be":[129],"designed":[130],"more":[132],"personalized":[133],"ways,":[134],"aiming":[135],"fit":[137],"a":[138],"variety":[139],"platforms":[142],"maximize":[144],"reach":[145],"impact":[147]},"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2024,"cited_by_count":2},{"year":2023,"cited_by_count":2},{"year":2022,"cited_by_count":3}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2021-03-29T00:00:00"}
