Perceptions of Clinical Trials and Factors Influencing Trial Participation Among Hispanic Patients with Non-Hodgkin Lymphoma

Background

Hispanic patients continue to be underrepresented in clinical trials. To better understand the factors that impact clinical trial participation, we surveyed patients with NHL receiving care at an academic institution on their perspectives on clinical trials, barriers to care, and helpful aids to encourage clinical trial participation. Here we report the findings of the Hispanic patients and non-Hispanic white patients; accrual is ongoing for other cohorts of patients.

Methods

Consecutive patients ≥ 18 years old with histologically confirmed NHL who received care at MD Anderson Cancer Center in the Texas Medical Center in Houston, Texas were invited to participate regardless of treatment status. A self-administered questionnaire was used to assess patient sociodemographic factors, perceptions and willingness to participate in different clinical trial scenarios as well as participant perceived barriers to care and facilitators of trial participation. The questionnaire included a total of 53 items with an additional 13 demographic items. The questionnaire was available in English and Spanish.

Results

Of the 1204 patients invited, 316 consented to participate and 285 ultimately completed the survey (participation rate 23.7%). Among the total participants, this cohort included 100 self-identified Hispanic (H) participants and 103 non-Hispanic white (NHW) participants diagnosed with NHL who completed the survey and were included here. The histology of our cohort included Follicular Lymphoma (FL) [35.6%]; Diffuse Large B-cell lymphoma (DLBCL) [18.2%], Mantle cell lymphoma (MCL) [18.7%], T-cell Lymphoma (TCL) [9.4%] Marginal Zone Lymphoma [7.8%]. Compared with NHW participants, Hispanic patients were younger (Median age of 60 vs 66 years), less likely to be male (H 54% vs NHW 66%), less likely to commute more than an hour away from the doctor’s office (54% vs 71.8%), had lower household income (income > $100,000 was 32% vs 41.7%) and less likely to have a bachelors’ degree or higher (38% vs 50.5%). There were similar prevalence histologies such as DLBCL (H 20% vs NHW 16.5%) and FL (H 36% vs NHW 35%) compared to rarer histologies such as MCL (H 11.1% vs NHW 26.2%) and MZL (H 12% vs NHW 3.9% ) which had disproportional prevalences. Hispanic patients were less likely to have previously participated in a clinical trial (28% vs 51.5%) and less likely to have discussed clinical trials as an option (49% vs 70.9%). A majority of Hispanic (81.0%) and NHW (92.3%) respondents stated that they understood what was meant by a “clinical research study” or “clinical trial” somewhat well or very well. Less than half of Hispanic participants (38.0%) and NHW participants (48.5%) reported being very willing to participate in a cancer clinical trial as their initial course of treatment. The most prevalent concern of both Hispanic and NHW participants respectively was the cost of a clinical trial (34.0%, 22.3%). Other top concerns included distance to the treatment center (32.0%, 13.6%) and frequency of contact with the care team (26.0%, 14.6%). Participants identified access to written materials (69.0%, 60.2%), insurance aid (65.0%, 68.0%), and access to videos (64.0%, 51.5%) as extremely helpful resources that could reduce the burden of participating in a clinical trial. Participants identified that it was most important that a treatment may improve their quality of life by decreasing pain level, increasing activity level, or other symptoms (76.0%, 91.3%).

Conclusions

Although most Hispanic and NHW participants reported a very good understanding of clinical trials and similar facilitators/barriers for trial participation, Hispanic patients were less likely to have discussed trials as an option with their care teams and less likely to have previously participated in a trial. Evidence-based interventions to address various barriers to clinical trials exist but data on their effectiveness and application is limited. Implementing strategically designed evidence-based interventions to address identified barriers and facilitators will be necessary to improve participation in lymphoma clinical trials.