Perceptions about participation in cancer clinical trials in New York state

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.

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

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.

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.

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

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.