Abstract P3-10-12: Breast cancer clinical trials: Patient experiences, preferences, and insights into increasing participation
Authors: Saxton C , Amsellem M , Buzaglo J 
Published: March 2017

Abstract
Clinical trials offer breast cancer patients access to the most innovative treatments, high levels of care and hope for a better future. Yet, fewer than 5% of individuals with breast cancer participate in clinical trials nationally. Education is commonly identified as a target for intervention to increase rates of participation. In late 2015, the Cancer Support Community (CSC) conducted an online survey assessing cancer clinical trials to inform development of an educational program aimed to increase clinical trial awareness and participation. Results from this survey highlighting the experiences, beliefs, and preferences of breast cancer patients are reported here.
239 individuals with breast cancer (47.2% of CSC's national online survey of cancer patients) responded to survey questions assessing their experiences, knowledge, beliefs, and preferences about cancer clinical trials. Most respondents were female (99.6%), Caucasian (84.9%), and averaged 59.6 years old (s.d. =9.7). 21.4% were diagnosed with metastatic breast cancer, and 22.4% had experienced a recurrence.
45% were currently receiving treatment and 75.2% were in remission. Nearly all (97.5%) had health insurance. 106 received treatment at an academic or comprehensive cancer center.
Most (87.5%) had heard of clinical trials pre-cancer, however, there was a wide range of beliefs about the purpose and potential benefits of and barriers to trial participation. While 35.8% had participated in trials, 57.9% had never considered participating in a clinical trial. 53.6% had discussed clinical trials with their healthcare team during treatment. Notably one quarter reported not discussing this at all. Of those having this discussion, 59.2% reported discussions were initiated by the physician, 13.6% by nurse or other healthcare provider, and 17.6% by the patient.During this discussion, only 19% felt that their goals and concerns related to clinical trial participation were meaningfully addressed. Not surprisingly, 95.9% reported more time with their doctors to discuss clinical trials would be “somewhat” or “very” helpful for aiding decision-making.
Respondents reported decision-making tools and resources that would be helpful to them. 97.4% reported that a website which included clinical trial information would be “somewhat” or “very helpful” in identifying clinical trials or aiding decision-making, yet such a resource was shared with only 27.0%. 70.5% reported that speaking directly with another patient who had participated in a clinical trial would be helpful; yet this was only offered to 8.8% of patients.
Based on these findings CSC with partner organizations is developing a series of products and programs to educate individuals who may be eligible for clinical trials. The survey data yields insight into the contents of a successful education and support program around clinical trials and highlights the necessity to provide a comprehensive program that addresses patient preferences for more time to discuss clinical trials with the oncology team and with other patients who had elected to participate in a clinical trial.
Citation Format: Saxton C, Amsellem M, Buzaglo J. Breast cancer clinical trials: Patient experiences, preferences, and insights into increasing participation [abstract]. In: Proceedings of the 2016 San Antonio Breast Cancer Symposium; 2016 Dec 6-10; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2017;77(4 Suppl):Abstract nr P3-10-12.