Purpose: To assess participants’ reactions to a targeted decision aid (DA) for minority cancer patients whose aim is to improve decision making about participation in cancer clinical trials (CCTs), and determine the effect of the DA on attitudes towards CCTs.
Method: We developed a web-based targeted DA using information from a previous telephone survey of 1100 cancer survivors and face-to-face semi-structure interviews with 45 cancer survivors. The DA includes components aimed to i) improve patient knowledge, ii) empower patients to communicate with healthcare providers, and iii) clarify values concerning participation in CCTs. Reactions to the decision aid were captured using 15 questions to elicit how useful, biased/unbiased, and thought provoking participants felt the DA was, measured on a 1-5 scale with higher values reflecting agreement with the statements. Attitudes towards CCTs (e.g., “very unsafe… very safe”, “very harmful… very beneficial”) were assessed on a 7 point scale.
Result: For the general question as to whether the DA would be useful in making a decision about participation in a CCT, all participants responded with a score of 4 or 5, mean 4.90 (±0.30). Scores were also around 4.9 for items addressing: if the information was easy to follow, if would encourage others to use, and if would share with healthcare providers and people helping with decisions. Participants did report feeling some level of bias in the DA towards study participation (3.72±1.40), and endorsed more strongly that the DA made them think of positives ((4.50±0.89) than negatives (3.58±1.59). However, the DA was viewed as very relevant (4.74±0.28), and did not make participants very upset or anxious about their own treatment (1.90±1.53) or in general (1.26±0.78). Attitudes towards clinical trials were overall positive, with pre-DA attitudes ranging from 5.73 (±1.07) to 6.37 (±0.95). These did not change significantly overall post-DA viewing, and were not significantly different by race. For individuals, however, changes on individual attitudes were as extreme as 6 points.
Conclusion: We found that a targeted DA was very well received by minority participants . Informal comments reinforced these quantitative findings, with participants expressing enthusiasm for the DA and encouragement to make it widely available to cancer patients. Attitudes towards clinical trials were positive overall initially, although highly variable among individuals.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making