Discordant attitudes and beliefs about cancer clinical trial participation between physicians, research staff, and cancer patients

Abstract

Background/Aims Essential to bringing innovative cancer treatments to patients is voluntary participation in clinical trials but approximately 8% of American cancer patients are enrolled onto a trial. We used a domain-oriented framework to assess barriers to cancer clinical trial enrollment. Methods Physicians (MD, DO, fellows, residents) and research staff (physician assistants, nurse practitioners, staff and research nurses, clinical assistants, and program coordinators) involved in clinical research at a comprehensive cancer center completed an online survey in 2017; adult cancer patients not currently enrolled in a trial were interviewed in 2018. To inform the construct of our physician/staff and patient surveys and to assess barriers to clinical trial enrollment, we first conducted in-depth interviews among 14 key informants representing medical, hematologic, gynecologic, neurologic, radiation oncology, as well as members of the clinical research team (one clinical research coordinator, one research nurse practitioner). Perceived structural, provider- and patient-level barriers to clinical trial enrollment were assessed. Differences in perceptions, attitudes, and beliefs toward clinical trial enrollment between (1) physicians and staff, (2) patients by ethnicity, and (3) physicians/staff and patients were examined. Results In total, 120 physicians/staff involved in clinical research (39.2% physicians, 60.8% staff; 48.0% overall response rate) and 150 cancer patients completed surveys. Nearly three-quarters of physician/staff respondents reported difficulty in keeping track of the eligibility criteria for open studies but was more often cited by physicians than staff (84.4% vs 64.3%, p = 0.02). Physicians more often reported lack of time to present clinical trial information than did staff( p < 0.001); 44.0% of staff versus 18.2% of physicians reported patient family interaction as a clinical trial enrollment barrier ( p = 0.007). Hispanic patients more often stated they would join a trial, even if standard therapy was an option compared to non-Hispanic patients (47.7% vs 20.8%, p = 0.002). Comparing the beliefs and perceptions of physicians/staff to those of patients, patients more often reported negative beliefs about clinical trial enrollment (e.g. being in a trial does not help patients personally, 32.9% vs 1.8%, p < 0.001) but less often felt they had no other options when agreeing to join (38.1% vs 85.6%, p < 0.001), and less often refused clinical trial enrollment due to lack of understanding (9.1% vs 63.3%, p = 0.001) than reported by physicians/staff. Conclusion Our findings indicate a wide gap between physician/staff and patient attitudes and beliefs about clinical trial enrollment and highlight the importance of focusing future initiatives to raise awareness of this incongruency. Reconciling these differences will require tailored education to reduce implicit biases and dispel misperceptions. Strategies to improve the quality of patient–provider communication and address infrastructure and resource issues are also needed to improve patient enrollment onto cancer clinical trials.

Patterns of National Cancer Institute‐Sponsored Clinical Trial Enrollment in Black Adolescents and Young Adults

“… 44 Other factors, including mistrust of the medical establishment and research due to historical racial injustice in clinical trials, may contribute to Black AYAs, and particularly Black men's relatively low enrollment in CTTs. 45 Similarly, the possibility of discordant attitudes 46 or implicit bias between provider and patient needs to be considered when determining what factors, either patient, provider or both, may contribute to low enrollment among Black AYA men.…”

Aggressiveness of care at end of life in patients with high‐grade glioma

“…There are, however, many other factors associated with trial participation, including patient trust in the medical system, medical literacy, socioeconomic status, educational background, and health care literacy. [31][32][33] These may all influence or be interrelated with the patient's own understanding of their illness, expectations of therapy, and trust in their oncologist. The physician approach to these patients may be different as well: in an effort to establish realistic expectations of treatment, discussions around goals of care may tend to occur earlier in this population.…”

“…Clinical trial participation is associated with incorporating novel and experimental therapies, which may be considered a more aggressive approach to anticancer therapy. There are, however, many other factors associated with trial participation, including patient trust in the medical system, medical literacy, socioeconomic status, educational background, and health care literacy 31–33 . These may all influence or be interrelated with the patient's own understanding of their illness, expectations of therapy, and trust in their oncologist.…”

Overcoming Disparities in Cancer: A Need for Meaningful Reform for Hispanic and Latino Cancer Survivors

“…However, studies have also shown that HL physicians are less likely to recommend clinical trials to HLs relative to NHW patients [72]. Even when HLs are enrolled in clinical trials, they are more likely to not fully understand the aims of the clinical trial, perhaps because of cultural or language barriers, when compared with non‐Hispanic patients, a concerning realization with substantial ethical considerations [73]. Clinical trials in cancer care are the gateway to medical innovation, and patients of all genders, races, and ethnicities must be equally represented in an effort to ensure the results are applicable to all patients [74].…”