Perceptions about participation in cancer clinical trials in New York state

Background: Clinical trials are valuable in advancing cancer care through the investigation of ways in which to better prevent, detect and diagnose, and/or treat cancer. Recruitment of adults into clinical trials has historically been low.

Objective: To survey adult cancer patients who reside in New York state to better understand their participation in and attitudes about clinical trials.

Methods: From January 2012-April 2013, we conducted a one-time survey about clinical trials in 8 cancer-treatment or cancer-patient support organizations in the state. Surveys were offered in person and online to adults with a past or current cancer diagnosis. Analysis was limited to adults who resided in the state and provided a self-reported status of previous participation in clinical trials.

Results: Of the 1,832 participants who completed the survey, 1,475 were included in the analysis. Our sample represented all regions of the state. Most of the respondents (68.1%) had never participated in a clinical trial. Almost 32% said they had never received information about research studies. Most (84%) felt that patients should be asked to participate in clinical trials, but fewer (70%) were willing to be approached about participation.

Limitations: The sample is predominantly white and female and overrepresents breast and hematologic cancers.

Conclusions: Increased outreach coupled with a team approach to educate and enroll patients in clinical trials may be the necessary first steps to increase participation in trials and ensure a diverse sample of participants.