Division of Hematology, Oncology & Stem Cell Transplant, Children's Memorial Hospital, Chicago, Illinois, USA.
Pediatr Blood Cancer. 2010 Jul 15;55(1):129-33. doi: 10.1002/pbc.22450.
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.
社会文化态度和观念通常被认为是招募非裔美国人参与医学研究的障碍，但尚无研究探讨影响镰状细胞病（SCD）患者或其患儿照顾者参与研究的因素。
我们在 6 个月的时间内向 SCD 患儿的父母或法定监护人发放了一份包含 32 个项目的自填式调查问卷。我们使用 Pearson's chi-square 检验来确定与对研究参与持有利态度相关的因素，并使用 logistic 回归分析来确定独立关联因素。
在这项初步研究中，我们共收集了 151 份调查问卷。总体而言，86%的受访者认为需要针对 SCD 开展更多的研究，57%的受访者愿意让自己的孩子参与医学研究，这表明他们对研究持有利态度。受访者认为需要针对 SCD 开展更多的研究（OR 23.4，95%CI 4.5-121.9，P = 0.001）、认为自己孩子的 SCD 更为严重（OR 2.7，95%CI 1.0-7.1，P = 0.041）以及先前接触过研究（OR 3.2，95%CI 1.0-10.3，P = 0.043）与对研究持有利态度显著相关，但在我们的回归模型中，仅有前两个因素为独立关联因素。受访者的出生国对研究参与态度没有影响。
允许孩子参与医学研究的 SCD 患儿父母很可能认为 SCD 需要开展更多的研究，并且他们的孩子的 SCD 病情较为严重或非常严重。基于与临床研究相关的已识别知识差距开发有效的工具，可能会提高该人群对研究的参与度。
