Parental attitudes toward research participation in pediatric sickle cell disease

Socio-cultural attitudes and perceptions are commonly cited barriers to the recruitment of African-Americans for medical research, yet no studies have examined the factors influencing research participation among individuals with sickle cell disease (SCD) or caregivers of children with SCD.

We distributed a 32-item, self-administered survey to parents or legal guardians of children with SCD over a 6-month period. We used Pearson's chi-square to determine factors associated with a favorable attitude toward research participation and logistic regression to determine independent associations.

We collected 151 surveys in this pilot study. In general, 86% of respondents believed more research needed to be done for SCD and 57% would allow their child to participate in a medical research study, corresponding to a favorable attitude. Respondent belief that more research needed to be done for SCD (OR 23.4, 95% CI 4.5-121.9, P = 0.001), perception of greater severity of their own child's SCD (OR 2.7, 95% CI 1.0-7.1, P = 0.041) and prior exposure to research (OR 3.2, 95% CI 1.0-10.3, P = 0.043) were significantly associated with a favorable attitude, although only the first two remained independent associations in our regression model. Attitude toward research participation was not affected by respondent country of birth.

Parents of children with SCD who allow participation in medical research are likely to believe that more research is needed in SCD and that their child's SCD is moderate to severe. Developing effective tools, based on identified knowledge gaps related to clinical research, may improve research participation in this population.