{"id":"https://openalex.org/W4380149146","doi":"https://doi.org/10.1016/j.jval.2023.03.1863","title":"PCR85 Sustained Humanistic Burden and Work Impact in Adults with Sickle Cell Disease with Recurrent Vaso-Occlusive Crises: Results from a Global Longitudinal Survey","display_name":"PCR85 Sustained Humanistic Burden and Work Impact in Adults with Sickle Cell Disease with Recurrent Vaso-Occlusive Crises: Results from a Global Longitudinal Survey","publication_year":2023,"publication_date":"2023-06-01","ids":{"openalex":"https://openalex.org/W4380149146","doi":"https://doi.org/10.1016/j.jval.2023.03.1863"},"language":"en","primary_location":{"id":"doi:10.1016/j.jval.2023.03.1863","doi":"https://doi.org/10.1016/j.jval.2023.03.1863","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2023.03.1863","pdf_url":"http://www.valueinhealthjournal.com/article/S1098301523019630/pdf","source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"},"volume":null,"type":"conference-abstract","indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"bronze","oa_url":"http://www.valueinhealthjournal.com/article/S1098301523019630/pdf","any_repository_has_fulltext":false},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5004725335","display_name":"Jennifer Drahos","orcid":"https://orcid.org/0000-0002-8454-9863","observed_orcids":["https://orcid.org/0000-0002-8454-9863"]},"institutions":[{"id":"https://openalex.org/I61970326","display_name":"Vertex Pharmaceuticals (United States)","ror":"https://ror.org/00anb1726","country_code":"US","type":"company","lineage":["https://openalex.org/I61970326"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"J. Drahos","raw_affiliation_strings":["Vertex Pharmaceuticals Incorporated, Boston, MA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vertex Pharmaceuticals Incorporated, Boston, MA, USA","institution_ids":["https://openalex.org/I61970326"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5020288558","display_name":"Adriana Boateng-Kuffour","orcid":"https://orcid.org/0009-0009-7366-6990","observed_orcids":["https://orcid.org/0009-0009-7366-6990"]},"institutions":[{"id":"https://openalex.org/I61970326","display_name":"Vertex Pharmaceuticals (United States)","ror":"https://ror.org/00anb1726","country_code":"US","type":"company","lineage":["https://openalex.org/I61970326"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"A. Boateng-Kuffour","raw_affiliation_strings":["Vertex Pharmaceuticals Incorporated, Boston, MA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vertex Pharmaceuticals Incorporated, Boston, MA, USA","institution_ids":["https://openalex.org/I61970326"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5072936611","display_name":"Melanie Calvert","orcid":"https://orcid.org/0000-0002-1856-837X","observed_orcids":["https://orcid.org/0000-0002-1856-837X"]},"institutions":[{"id":"https://openalex.org/I79619799","display_name":"University of Birmingham","ror":"https://ror.org/03angcq70","country_code":"GB","type":"education","lineage":["https://openalex.org/I79619799"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"M. Calvert","raw_affiliation_strings":["University of Birmingham, Birmingham, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of Birmingham, Birmingham, UK","institution_ids":["https://openalex.org/I79619799"]}]},{"author_position":"middle","author":{"id":null,"display_name":"A. Valentine","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"A. Valentine","raw_affiliation_strings":["Sick Cells, Washington, DC, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Sick Cells, Washington, DC, USA","institution_ids":[]}]},{"author_position":"middle","author":{"id":null,"display_name":"A. Mason","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I4210119209","display_name":"Sickle Cell Institute Chhattisgarh, Raipur","ror":"https://ror.org/02jkmyz31","country_code":"IN","type":"healthcare","lineage":["https://openalex.org/I4210119209"]}],"countries":["IN"],"is_corresponding":false,"raw_author_name":"A. Mason","raw_affiliation_strings":["Sickle Cell Care Manchester, Manchester, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Sickle Cell Care Manchester, Manchester, UK","institution_ids":["https://openalex.org/I4210119209"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5048661697","display_name":"N. Li","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I61970326","display_name":"Vertex Pharmaceuticals (United States)","ror":"https://ror.org/00anb1726","country_code":"US","type":"company","lineage":["https://openalex.org/I61970326"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"N. Li","raw_affiliation_strings":["Vertex Pharmaceuticals Incorporated, Boston, MA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"Vertex Pharmaceuticals Incorporated, Boston, MA, USA","institution_ids":["https://openalex.org/I61970326"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5064321912","display_name":"Zahra Pakbaz","orcid":null,"observed_orcids":[]},"institutions":[{"id":"https://openalex.org/I204250578","display_name":"University of California, Irvine","ror":"https://ror.org/04gyf1771","country_code":"US","type":"education","lineage":["https://openalex.org/I204250578"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Z. Pakbaz","raw_affiliation_strings":["University of California Irvine School of Medicine, Orange, CA, USA"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"University of California Irvine School of Medicine, Orange, CA, USA","institution_ids":["https://openalex.org/I204250578"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5041013206","display_name":"Farrukh Shah","orcid":"https://orcid.org/0000-0001-5975-1309","observed_orcids":["https://orcid.org/0000-0001-5975-1309"]},"institutions":[{"id":"https://openalex.org/I1307946715","display_name":"NHS Blood and Transplant","ror":"https://ror.org/0227qpa16","country_code":"GB","type":"healthcare","lineage":["https://openalex.org/I1307946715"]}],"countries":["GB"],"is_corresponding":false,"raw_author_name":"F. Shah","raw_affiliation_strings":["NHS Blood and Transplant, London, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"NHS Blood and Transplant, London, UK","institution_ids":["https://openalex.org/I1307946715"]}]},{"author_position":"middle","author":{"id":null,"display_name":"N. Ainsworth","orcid":null,"observed_orcids":[]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"N. Ainsworth","raw_affiliation_strings":["QC Medica, Liverpool, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"QC Medica, Liverpool, UK","institution_ids":[]}]},{"author_position":"last","author":{"id":"https://openalex.org/A5070568819","display_name":"Antony Paul Martin","orcid":"https://orcid.org/0000-0003-4383-6038","observed_orcids":["https://orcid.org/0000-0003-4383-6038"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"A. Martin","raw_affiliation_strings":["QC Medica, Liverpool, UK"],"raw_orcid":null,"affiliations":[{"raw_affiliation_string":"QC Medica, Liverpool, UK","institution_ids":[]}]}],"institutions":[],"countries_distinct_count":3,"institutions_distinct_count":5,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":{"value":3200,"currency":"USD","value_usd":3200},"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":2,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":"26","issue":"6","first_page":"S327","last_page":"S327"},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":1.0,"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"}},"topics":[{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":1.0,"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"}},{"id":"https://openalex.org/T10804","display_name":"Health Systems, Economic Evaluations, Quality of Life","score":9.999999747378752e-05,"subfield":{"id":"https://openalex.org/subfields/2002","display_name":"Economics and Econometrics"},"field":{"id":"https://openalex.org/fields/20","display_name":"Economics, Econometrics and Finance"},"domain":{"id":"https://openalex.org/domains/2","display_name":"Social Sciences"}},{"id":"https://openalex.org/T11280","display_name":"Hemophilia Treatment and Research","score":0.0,"subfield":{"id":"https://openalex.org/subfields/2720","display_name":"Hematology"},"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/sickle-cell-disease","display_name":"sickle cell disease","score":1.0},{"id":"https://openalex.org/keywords/vaso-occlusive-crisis","display_name":"vaso-occlusive crisis","score":0.968999981880188},{"id":"https://openalex.org/keywords/health-related-quality-of-life","display_name":"health-related quality of life","score":0.8420000076293945},{"id":"https://openalex.org/keywords/labor-productivity","display_name":"labor productivity","score":0.9959999918937683},{"id":"https://openalex.org/keywords/humanistic-burden","display_name":"humanistic burden","score":0.9089999794960022},{"id":"https://openalex.org/keywords/adults","display_name":"adults","score":0.4869999885559082},{"id":"https://openalex.org/keywords/longitudinal-survey","display_name":"longitudinal survey","score":0.5720000267028809}],"concepts":[{"id":"https://openalex.org/C2992962319","wikidata":"https://www.wikidata.org/wiki/Q628895","display_name":"Work productivity","level":3,"score":0.8545374274253845},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.7111676931381226},{"id":"https://openalex.org/C2779951463","wikidata":"https://www.wikidata.org/wiki/Q7268788","display_name":"Quality of life (healthcare)","level":2,"score":0.6261547803878784},{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.582585871219635},{"id":"https://openalex.org/C2777895361","wikidata":"https://www.wikidata.org/wiki/Q1758614","display_name":"Longitudinal study","level":2,"score":0.5286077857017517},{"id":"https://openalex.org/C2780441568","wikidata":"https://www.wikidata.org/wiki/Q7916864","display_name":"Vaso-occlusive crisis","level":4,"score":0.43238988518714905},{"id":"https://openalex.org/C74909509","wikidata":"https://www.wikidata.org/wiki/Q10387","display_name":"Gerontology","level":1,"score":0.4228821098804474},{"id":"https://openalex.org/C2780075939","wikidata":"https://www.wikidata.org/wiki/Q7075717","display_name":"Occlusive","level":2,"score":0.41668957471847534},{"id":"https://openalex.org/C204983608","wikidata":"https://www.wikidata.org/wiki/Q2111958","display_name":"Productivity","level":2,"score":0.40083229541778564},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3768685758113861},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.34172323346138},{"id":"https://openalex.org/C2778620579","wikidata":"https://www.wikidata.org/wiki/Q185034","display_name":"Sickle cell anemia","level":3,"score":0.23899394273757935},{"id":"https://openalex.org/C142724271","wikidata":"https://www.wikidata.org/wiki/Q7208","display_name":"Pathology","level":1,"score":0.1772826910018921},{"id":"https://openalex.org/C159110408","wikidata":"https://www.wikidata.org/wiki/Q121176","display_name":"Nursing","level":1,"score":0.09010159969329834},{"id":"https://openalex.org/C50522688","wikidata":"https://www.wikidata.org/wiki/Q189833","display_name":"Economic growth","level":1,"score":0.06179347634315491},{"id":"https://openalex.org/C162324750","wikidata":"https://www.wikidata.org/wiki/Q8134","display_name":"Economics","level":0,"score":0.0}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.1016/j.jval.2023.03.1863","doi":"https://doi.org/10.1016/j.jval.2023.03.1863","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2023.03.1863","pdf_url":"http://www.valueinhealthjournal.com/article/S1098301523019630/pdf","source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"}],"best_oa_location":{"id":"doi:10.1016/j.jval.2023.03.1863","doi":"https://doi.org/10.1016/j.jval.2023.03.1863","is_oa":true,"landing_page_url":"https://doi.org/10.1016/j.jval.2023.03.1863","pdf_url":"http://www.valueinhealthjournal.com/article/S1098301523019630/pdf","source":{"id":"https://openalex.org/S678965","display_name":"Value in Health","issn_l":"1098-3015","issn":["1098-3015","1524-4733"],"is_oa":false,"is_in_doaj":false,"is_core":true,"listed_in":["abdc-a","anvur-class-a","anvur-scientific","cwts-core","dongbi-a","doyens","jufo-2","ki-jl-2","medline","norway-2","poland-140","russia-white-list-1","vabb-shw"],"host_organization":"https://openalex.org/P4310320990","host_organization_name":"Elsevier BV","host_organization_lineage":["https://openalex.org/P4310320990"],"host_organization_lineage_names":["Elsevier BV"],"type":"journal"},"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Value in Health","raw_type":"journal-article"},"sustainable_development_goals":[{"id":"https://metadata.un.org/sdg/3","score":1.0,"display_name":"Good health and well-being"}],"study_designs":[],"awards":[],"funders":[],"has_content":{"pdf":true,"grobid_xml":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4380149146.pdf","grobid_xml":"https://content.openalex.org/works/W4380149146.grobid-xml"},"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W4310102639","https://openalex.org/W3000542862","https://openalex.org/W4389231738","https://openalex.org/W4409529349","https://openalex.org/W2953824753","https://openalex.org/W2953837553","https://openalex.org/W3027820444","https://openalex.org/W3134421364","https://openalex.org/W4417020049","https://openalex.org/W4389231908"],"abstract_inverted_index":null,"counts_by_year":[{"year":2026,"cited_by_count":1},{"year":2024,"cited_by_count":1}],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2023-06-11T00:00:00"}