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Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research.

Abstract：

INTRODUCTION:Sickle cell disease (SCD) research is hampered by disparities in participation due in part to mistrust of research among racial/ethnic minorities. Beyond the historic context of research misconduct, little is known about the associations of social ecologic factors with mistrust and of mistrust with SCD clinical trials enrollment. This study evaluated proximal (age, gender, disease severity, perceived stress, SES) and distal (religious beliefs, social support, instrumental support) factors related to mistrust of research among caregivers of children with SCD and adolescents and young adults (AYAs) with SCD. METHODS:Over an 18-month period (2009-2010), participants completed questionnaires of perceived barriers and benefits to clinical trials enrollment, perceived stress, and self-reported demographic and disease-related information. Analyses (January-June 2015) used multivariable linear regressions to evaluate predictors of mistrust. RESULTS:Data were analyzed for 154 caregivers (mean age, 38.75 years; SD=9.56 years; 90.30% female) and 88 AYAs (mean age, 24.76 years; SD=7.25 years; 46.40% female). Among caregivers (full model, R(2)=0.14, p≤0.001), greater mistrust was explained by higher perceived stress (β=0.04, p=0.052); religious beliefs (β=0.61, p≤0.001); and greater instrumental support (β=0.07, p=0.044). Among AYAs (full model, R(2)=0.18, p≤0.001), higher mistrust was explained by being male (β=-0.56, p≤0.001) and lower instrumental support (β=-0.11, p=0.016). Mistrust was significantly greater among caregivers that reported no prior involvement in medical research (p=0.003). CONCLUSIONS:By understanding the complexity through which social ecologic factors contribute to mistrust, researchers may create targeted strategies to address mistrust and increase engagement in SCD research for caregivers and AYAs.

journal_name

Am J Prev Med

journal_title

American journal of preventive medicine

authors

Stevens EM,Patterson CA,Li YB,Smith-Whitley K,Barakat LP

doi

10.1016/j.amepre.2016.01.024

subject

Has Abstract

pub_date

2016-07-01 00:00:00

pages

S78-86

issue

1 Suppl 1

eissn

0749-3797

issn

1873-2607

pii

S0749-3797(16)00050-7

journal_volume

pub_type

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Mistrust of Pediatric Sickle Cell Disease Clinical Trials Research.