Clinical trials represent a critical component in developing effective cancer therapies. Low rates of participation have negatively impacted progress in sarcoma trials. This survey study evaluated patients’ attitudes, knowledge, self-efficacy for decision-making, receptivity, general willingness to participate in trials, and perceptions related to molecular profiling (MP) of tumors.
IRB approval was obtained. Patients with sarcoma who were evaluated at an academic medical center between 2007 and 2017 were identified through the Enterprise Data Warehouse. A link to an online self-administered survey was emailed to patients. Data were analyzed using Spearman correlations and the Mann-Whitney test.
Surveys were emailed to 750 patients of which 311 patients opened and 206 patients completed a portion of the survey (27.5% of total and 66.2% of opened surveys). Of the 206 patients, median age was 52 years, 57.8% were female, and 24.8% reported metastatic disease. Greater knowledge of trials correlated with increased positive attitudes toward trial participation (p < 0.001) and positive attitudes correlated with greater trial self-efficacy (p < 0.001). Patients with metastatic disease had more positive attitudes compared with nonmetastatic (p = 0.033). Trial enrollment was associated with greater knowledge (p = 0.002) and positive attitudes (p < 0.001). Among patients who reported knowledge of tumor MP (n = 46), 30.4% credit MP with a > 50% chance of isolating a targetable result, and 71.7% assume if an experimental treatment was found based on these results, there is a > 50% likelihood of it being effective. Better attitudes and higher self-efficacy were associated with expectations of lower likelihood of developing side effects from an experimental therapy (p = 0.0096; p = 0.0184). Of patients who had MP performed (n = 18), the most important consideration for this test was its ability to improve their survival and quality of life.
Improving knowledge of trials among sarcoma patients may lead to more positive attitudes and greater self-efficacy regarding trial enrollment. Sarcoma patients tend to overestimate the potential benefit of MP; thus, setting expectations with regards to potential benefit of MP is critically important.
Clinical trial identification
Legal entity responsible for the study
All authors have declared no conflicts of interest.