{"id":"https://openalex.org/W4392155072","doi":"https://doi.org/10.25302/02.2024.cdr.160936055","title":"Comparing Ways to Help Parents of Children with Sickle Cell Disease Decide on Treatment -- The ENGAGE HU Study","display_name":"Comparing Ways to Help Parents of Children with Sickle Cell Disease Decide on Treatment -- The ENGAGE HU Study","publication_year":2024,"publication_date":"2024-02-26","ids":{"openalex":"https://openalex.org/W4392155072","doi":"https://doi.org/10.25302/02.2024.cdr.160936055"},"language":"en","primary_location":{"id":"doi:10.25302/02.2024.cdr.160936055","doi":"https://doi.org/10.25302/02.2024.cdr.160936055","is_oa":true,"landing_page_url":"https://doi.org/10.25302/02.2024.cdr.160936055","pdf_url":"https://www.pcori.org/sites/default/files/PCORI-Crosby496-English-Abstract.pdf","source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cincinnati Children's Hospital Medical Center","raw_type":"report"},"volume":null,"type":"report","is_traditional":false,"indexed_in":["crossref"],"open_access":{"is_oa":true,"oa_status":"gold","oa_url":"https://www.pcori.org/sites/default/files/PCORI-Crosby496-English-Abstract.pdf","any_repository_has_fulltext":null},"authorships":[{"author_position":"first","author":{"id":"https://openalex.org/A5020353142","display_name":"Lori E. Crosby","orcid":"https://orcid.org/0000-0001-6656-7745","observed_orcids":["https://orcid.org/0000-0001-6656-7745"]},"institutions":[{"id":"https://openalex.org/I1285204247","display_name":"Cincinnati Children's Hospital Medical Center","ror":"https://ror.org/01hcyya48","country_code":"US","type":"healthcare","lineage":["https://openalex.org/I1285204247"]}],"countries":["US"],"is_corresponding":false,"raw_author_name":"Lori Crosby","raw_affiliation_strings":["Organization Cincinnati Children's Hospital Medical Center"],"raw_orcid":"https://orcid.org/0000-0001-6656-7745","affiliations":[{"raw_affiliation_string":"Organization Cincinnati Children's Hospital Medical Center","institution_ids":["https://openalex.org/I1285204247"]}]},{"author_position":"middle","author":{"id":"https://openalex.org/A5035284618","display_name":"Constance A. Mara","orcid":"https://orcid.org/0000-0002-6776-8060","observed_orcids":["https://orcid.org/0000-0002-6776-8060"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Constance Mara","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5089104480","display_name":"Yolanda Johnson","orcid":"https://orcid.org/0000-0002-5407-6487","observed_orcids":["https://orcid.org/0000-0002-5407-6487"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Yolanda Johnson","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"middle","author":{"id":"https://openalex.org/A5091171923","display_name":"Rogelle Hackworth","orcid":"https://orcid.org/0000-0002-2648-335X","observed_orcids":["https://orcid.org/0000-0002-2648-335X"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Rogelle Hackworth","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]},{"author_position":"last","author":{"id":"https://openalex.org/A5058382205","display_name":"Charles T. Quinn","orcid":"https://orcid.org/0000-0002-2372-2175","observed_orcids":["https://orcid.org/0000-0002-2372-2175"]},"institutions":[],"countries":[],"is_corresponding":false,"raw_author_name":"Charles Quinn","raw_affiliation_strings":[],"raw_orcid":null,"affiliations":[]}],"institutions":[],"countries_distinct_count":1,"institutions_distinct_count":1,"corresponding_author_ids":[],"corresponding_institution_ids":[],"apc_list":null,"apc_paid":null,"fwci":null,"has_fulltext":true,"cited_by_count":0,"citation_normalized_percentile":null,"cited_by_percentile_year":null,"biblio":{"volume":null,"issue":null,"first_page":null,"last_page":null},"is_retracted":false,"is_paratext":false,"is_xpac":false,"primary_topic":{"id":"https://openalex.org/T10554","display_name":"Hemoglobinopathies and Related Disorders","score":0.5702999830245972,"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":0.5702999830245972,"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/T10827","display_name":"Patient-Provider Communication in Healthcare","score":0.39750000834465027,"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/T14437","display_name":"Ethics and Legal Issues in Pediatric Healthcare","score":0.007600000128149986,"subfield":{"id":"https://openalex.org/subfields/2735","display_name":"Pediatrics, Perinatology and Child Health"},"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/hydroxyurea","display_name":"hydroxyurea","score":0.9409999847412109},{"id":"https://openalex.org/keywords/shared-decision-making","display_name":"shared decision-making","score":1.0},{"id":"https://openalex.org/keywords/patient-clinician-communication","display_name":"patient-clinician communication","score":0.6159999966621399},{"id":"https://openalex.org/keywords/treatment-decision-support","display_name":"treatment decision support","score":0.7099999785423279},{"id":"https://openalex.org/keywords/patient-education-materials","display_name":"patient education materials","score":0.3779999911785126},{"id":"https://openalex.org/keywords/pain-management","display_name":"pain management","score":0.35899999737739563},{"id":"https://openalex.org/keywords/treatment-side-effects","display_name":"treatment side effects","score":0.460999995470047}],"concepts":[{"id":"https://openalex.org/C2779134260","wikidata":"https://www.wikidata.org/wiki/Q12136","display_name":"Disease","level":2,"score":0.7075067162513733},{"id":"https://openalex.org/C71924100","wikidata":"https://www.wikidata.org/wiki/Q11190","display_name":"Medicine","level":0,"score":0.6528081297874451},{"id":"https://openalex.org/C2992972558","wikidata":"https://www.wikidata.org/wiki/Q2509220","display_name":"Blood cancer","level":3,"score":0.509657621383667},{"id":"https://openalex.org/C177713679","wikidata":"https://www.wikidata.org/wiki/Q679690","display_name":"Intensive care medicine","level":1,"score":0.39639806747436523},{"id":"https://openalex.org/C512399662","wikidata":"https://www.wikidata.org/wiki/Q3505712","display_name":"Family medicine","level":1,"score":0.38957419991493225},{"id":"https://openalex.org/C1862650","wikidata":"https://www.wikidata.org/wiki/Q186005","display_name":"Physical therapy","level":1,"score":0.3349766135215759},{"id":"https://openalex.org/C126322002","wikidata":"https://www.wikidata.org/wiki/Q11180","display_name":"Internal medicine","level":1,"score":0.27065959572792053},{"id":"https://openalex.org/C121608353","wikidata":"https://www.wikidata.org/wiki/Q12078","display_name":"Cancer","level":2,"score":0.13538768887519836}],"mesh":[],"locations_count":1,"locations":[{"id":"doi:10.25302/02.2024.cdr.160936055","doi":"https://doi.org/10.25302/02.2024.cdr.160936055","is_oa":true,"landing_page_url":"https://doi.org/10.25302/02.2024.cdr.160936055","pdf_url":"https://www.pcori.org/sites/default/files/PCORI-Crosby496-English-Abstract.pdf","source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cincinnati Children's Hospital Medical Center","raw_type":"report"}],"best_oa_location":{"id":"doi:10.25302/02.2024.cdr.160936055","doi":"https://doi.org/10.25302/02.2024.cdr.160936055","is_oa":true,"landing_page_url":"https://doi.org/10.25302/02.2024.cdr.160936055","pdf_url":"https://www.pcori.org/sites/default/files/PCORI-Crosby496-English-Abstract.pdf","source":null,"license":null,"license_id":null,"version":"publishedVersion","is_accepted":true,"is_published":true,"raw_source_name":"Cincinnati Children's Hospital Medical Center","raw_type":"report"},"sustainable_development_goals":[{"display_name":"Good health and well-being","id":"https://metadata.un.org/sdg/3","score":0.9922999739646912}],"study_designs":[],"awards":[],"funders":[],"has_content":{"grobid_xml":true,"pdf":true},"content_urls":{"pdf":"https://content.openalex.org/works/W4392155072.pdf","grobid_xml":"https://content.openalex.org/works/W4392155072.grobid-xml"},"referenced_works_count":0,"referenced_works":[],"related_works":["https://openalex.org/W3131585763","https://openalex.org/W4310127477","https://openalex.org/W4408245237","https://openalex.org/W4389248293","https://openalex.org/W1501084182","https://openalex.org/W2883229004","https://openalex.org/W2967629285","https://openalex.org/W2770415197","https://openalex.org/W2604296942","https://openalex.org/W1897506258"],"abstract_inverted_index":{"What":[0],"was":[1],"the":[2,24,84,98],"research":[3,85],"about?In":[4],"sickle":[5],"cell":[6],"disease,":[7],"or":[8,49,62],"SCD,":[9],"red":[10,32],"blood":[11,17,33],"cells":[12,34],"change":[13],"shape":[14],"and":[15,21,36,39,71,75],"block":[16],"flow,":[18],"causing":[19],"pain":[20,38],"damage":[22,40],"to":[23,64,90,106],"body.Hydroxyurea":[25],"is":[26],"a":[27],"medicine":[28],"that":[29],"helps":[30,69],"keep":[31],"healthy":[35],"reduces":[37],"from":[41],"SCD.But":[42],"some":[43],"people":[44,96],"may":[45],"have":[46],"side":[47],"effects":[48],"other":[50],"problems":[51],"when":[52,103],"taking":[53],"this":[54,82],"medicine.National":[55],"guidelines":[56],"recommend":[57],"using":[58],"shared":[59],"decision":[60],"making,":[61],"SDM,":[63],"discuss":[65],"treatment":[66,80],"with":[67],"hydroxyurea.SDM":[68],"patients":[70],"clinicians,":[72],"like":[73],"doctors":[74],"nurses,":[76],"make":[77],"decisions":[78],"about":[79,109],"together.In":[81],"study,":[83],"team":[86],"compared":[87],"two":[88],"ways":[89,105],"support":[91,107],"SDM":[92,108],"use:":[93],"How":[94],"can":[95,100],"use":[97,101],"results?Clinics":[99],"results":[102],"considering":[104],"treatments":[110],"for":[111],"SCD.":[112]},"counts_by_year":[],"updated_date":"2026-11-04T10:54:05.112534","created_date":"2024-02-27T00:00:00"}
