Nidhi Bhatt|Cecelia Calhoun|Jason Hodges|Chinonyelum Nwosu|Guolian Kang|Allison A. King|Xiwen Zhao|Jane S. Hankins
Evaluation of Factors Influencing Health Literacy in Adolescents and Adults with Sickle Cell Disease
St. Jude Children's Research Hospital|Washington University in St. Louis|St. Jude Children's Research Hospital|St. Jude Children's Research Hospital|St. Jude Children's Research Hospital|Washington University in St. Louis|St. Jude Children's Research Hospital|St. Jude Children's Research Hospital
introduction united states 36 adults limited health literacy associated poor health outcomes kutner et al national assessment adult literacy2006 health literacy defined capacity obtain process understand basic health information services needed make appropriate health decisions nielsenbohlman et al national academies press2004 health literacy understudied sickle cell disease scd genetic disease affecting minority population united states scd preventive treatment requires patient engagement therefore health literacy important determinant health outcomes scd previous studies reported health literacy adolescents scd suboptimal perry et al j pediatr nur2017 studies investigated factors influencing health literacy population health literacy impacted many factors cognition socioeconomic status education level gender study evaluated health literacy level factors influenced health literacy adolescents adults scd addition assessed relationship health literacy level hydroxyurea therapy use one two fdaapproved diseasemodifying therapies scd methods cross sectional study adolescents adults scd performed st jude childrens research hospital st louis childrens hospital adolescents adults ages 15 45 years completed health literacy assessment using newest vital sign nvs nvs validated tool 6 questions tests reading mathematics comprehension based nutrition label weiss et al ann fam med2005 score 01 suggests high likelihood limited health literacy 23 indicates possibility limited health literacy 46 almost always suggests adequate health literacy selfreported demographic information collected educational level household income age sex race additionally scd genotypes hydroxyurea utilization confirmed chart review results random sample 125 adolescents adults scd evaluated table 1 34 281 hb sc hb sthalassemia 87719 hgb ss hgb s0thalassemia 4 participants unknown genotypes limited health literacy prevalent 40 32 subjects adequate literacy median nvs score 2 participants participants hgb sshgb s0thalassemia likely hydroxyurea plt0001 chisquare test nvs scores subjects less severe genotype significantly different compared severe genotypes p02 manwhitneywilcoxon testmww difference health literacy scores hydroxyurea hydroxyurea p024 mww test however despite low health literacy prevalent 85 68 subjects hb ss hbs0thalassemia hydroxyurea income level significantly different patient hydroxyurea hydroxyurea p 0034 fishers exact test addition patient whose income 35000 found higher nvs score p0012 kruskalwallis test figure 1 subjects high nvs scores significantly older p0026 analysis variance test education significantly associated health literacy p0003 fishers exact conclusion study shows low prevalence adequate health literacy amongst adolescents adults scd data corroborate previous literature reported limited health literacy population well adds granularity factors may influence suboptimal outcome statistically significant association health literacy income level education level adolescents young adults scd health literacy significantly associated sickle cell genotype hydroxyurea use study highlights social determinants health specific need address health literacy scd patients optimize care adolescents young adults scd targeted multimodal interventions tailored low health literacy levels employed reduce morbidity mortality vulnerable population disclosures kang mbio st jude childrens research hospital existing exclusive license ongoing partnership mustang bio clinical development commercialization xscid gene therapy kingamphivena therapeutics research funding bioline consultancy celgene consultancy cell works consultancy incyte consultancy magenta therapeutics membership entitys board directors advisory committees novimmune research funding rivervest consultancy tioma therapeutics formerly vasculox inc consultancy wugen equity ownership zhaombio st jude childrens research hospital existing exclusive license ongoing partnership mustang bio clinical development commercialization xscid gene therapy hankinsnhlbi research funding national committee quality assurance consultancy global blood therapeutics research funding nhlbi honoraria aspho honoraria lynks foundation research funding novartis research funding bluebird bio consultancy