Capacities.org

Buddy Program for Breast Cancer Clinical Trials

Allison C. Morrill, JD, PhD, Principal Investigator

Funded by National Cancer Institute (CA 70596) in conjunction with National Breast Cancer Action Plan

The purpose of this pilot project was to develop, evaluate and refine a buddy program for women with breast cancer who are eligible to participate in breast cancer clinical trials.  The “buddy” is a woman who has already participated in a breast cancer clinical trial.  The Buddy Program paired trial candidates with a buddy who provided information and support through the decision-making process.

Evaluation Results

A total of 31 buddies were recruited and trained at the six sites. A total of 43 candidates were recruited: 23 from six clinical sites and 20 from the Web site.  On average, buddy-candidate pairs had 1.6 contacts and communicated for a total of 45-65 minutes.  By far the most common topic of candidates’ concern was possible side effects (e.g., pain, hair loss, nausea, menopausal symptoms). Buddies usually described their own trial experiences, qualifying them with a statement that everyone is different. 

Discussions differed sharply between the candidates for treatment and prevention trials: Prevention candidates had fewer questions, and felt a lack of urgency.  For these reasons, a buddy program for prevention trials should be separate from a buddy program for treatment trials. 

At follow-up interviews, candidates felt well informed about the benefits and risks, and their involvement, although they felt poorly informed about what aspects of the treatment would or would not be covered by insurance.

The Buddy Program proved to be a good concept, very worthwhile and satisfying for those who participated.  Training of the buddies was refined over the course of six repetitions, and can be easily replicated.  Recruitment of candidates from clinical sites was quite problematic and, due to the urgency of treatment, timing is critical.  By contrast, there were many inquiries from women searching the Web - indeed, many were looking for breast cancer clinical trials.  The Web could prove to be a powerful recruitment tool for clinical trials themselves.  It is clearly a more feasible path for finding candidates who want a buddy.

Participants did feel that closure was lacking.  A better system would continue through the trial (or for the first 6 months of a prevention trial), provide feedback to the buddy, and have a formal ending.

Breast Cancer in Younger Women

Nancy Avis, PhD, Principal Investigator
Allison C. Morrill, JD, PhD, Project Director (Phase I)

Funded by National Cancer Institute

This project conducted research about the experiences of younger women with breast cancer: how it affected their self-image, their relationships, their sexuality.

Four Stories: Younger Women with Breast Cancer (video)

The research produced a documentary video program in which four young women talk about their experiences after being diagnosed with breast cancer and how they coped. Women describe how they empowered themselves with information and found positive directions to enrich their lives. It also produece a companion web site.

Videotape for Breast Cancer Clinical Trials

Nancy Avis, PhD, Principal Investigator
Allison C. Morrill, JD, PhD, Project Director (Phase I)

Funded by National Cancer Institute

Phase I of this project conducted a preliminary study to develop a documentary video program that helps women with breast cancer make the decision to enroll in a clinical trial.

Breast Cancer: Is a Clinical Trial Right For You? (video)

A documentary video program that helps women with cancer make the decision to enroll in a clinical trial. Three women tell their stories, describing how and why they made their decisions, and their successes with clinical trials.

Awards:

© Copyright 2004-2013 Capacities.  All rights reserved.  PO Box 737, Portland, ME 04104-0737.  207.370.8830
Please submit any problems or suggestions concerning this website to webmaster[at]capacities[dot]org.