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Barriers and facilitators to research participation among adults, and parents of children with sickle cell disease: A trans-regional survey

key information

source: American Journal of Hematology

year: 2016

authors: Cronin R M, Hankins J S, Adams-Graves P, Thompson A A, Kalinyak K, Byrd J, McClain B, Kassim A, DeBaun M, Treadwell M

summary/abstract:

Patient recruitment into sickle cell disease (SCD) clinical trials has not always been robust, leading to delayed results or even failure to trial completion. Disparities impacting participation in research include race, lower socioeconomic status and lower health literacy. We sought to extend previous research by surveying adults with SCD and parents of children with SCD across geographically diverse regions in the U.S. We hypothesized that demographic variables such as lower income and education would present barriers to interest in research participation, as would psychosocial variables (depression symptoms and lower health literacy). We also evaluated patient/family preferences in use of technology for being contacted about research.

We surveyed a convenience sample of adults, and parents of children with SCD, all genotypes. We used the Mid-South Clinical Data Research Network survey to gather socio-demographic information, depression symptoms (Patient Health Questionnaire—PHQ-2) and health literacy (Brief Health Literacy Screening). We assessed participant interest in varying research types and asked if they would want to be contacted for research using electronic communication—e-mail, text messaging, and social media—as well as traditional face-to-face conversations in clinic or phone calls. We examined differences in demographic and psychosocial variables between participants who responded they were interested in each research type versus those that were not (study outcome) using Fisher’s exact and Wilcoxon tests, and created logistic regression models for each research type, analyses performed in R version 3.2.2.

organization: Vanderbilt University Medical Center, Nashville, Tennessee; St Jude Children's Research Hospital, Memphis, Tennessee; University of Tennessee Health Science Center, Memphis, Tennessee; Northwestern University, Chicago, Illinois; Cincinnati Children's Hospital, Cincinnati, Ohio; UCSF Benioff Children's Hospital Oakland, Oakland, California

DOI: 10.1002/ajh.24483

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