Understanding Barriers to Clinical Trial Participation Among Older Adults

November 2020 Vol 11, No 11
M. Claire Saxton, MBA
Cancer Support Community,
Washington, DC
Maria B. Gonzalo, MS
Cancer Support Community,
Washington, DC
Kirstin Fearnley, MALS
Cancer Support Community,
Washington, DC
Peggy Rios, PhD
Counseling and Wellness Center, University of Florida
Alexandra K. Zaleta, PhD
Research and Training Institute, Cancer Support Community,
Philadelphia, PA

Background: More than two-thirds of all new cancers are diagnosed among adults aged 60 years and older, and the number of seniors living in the United States continues to rise.1,2 However, only a small fraction of older cancer patients has been included in cancer clinical trials.3 Knowing the negative impacts of low clinical trials participation, the Cancer Support Community (CSC) conducted community-based research to understand patient-related barriers to clinical trial participation among older adults affected by cancer.

Objective: Examine patient-related barriers that limit participation in cancer clinical trials among older adults. Findings will assist in the development of an educational booklet about clinical trials to ensure that older adult cancer patients understand what clinical trials are and how they can be accessed.

Methods: In January and February 2020, CSC facilitated 3 in-person focus groups with older adults. A total of 32 patients and caregivers aged 65 years or older participated across 3 sites.

The group discussion was led by 1 facilitator. The discussion guide explored participants’ understanding of clinical trials and their perceptions about barriers to accessing clinical trials. All discussions were transcribed and summarized under key themes.

Results: Key findings include:

  • 92% of participants expressed concerns over an assignment to a “placebo.” Of those, only 23% understood that the “placebo” or control condition involved receiving the current standard treatment for the disease
  • 56% of participants reported they would be more at ease taking part in a clinical trial if they knew more about the reputation and motives of the agencies conducting clinical trials
  • 98% of participants expressed 1 or more perceived barriers to accessing clinical trials, including cost, transportation, or fear of side effects

Conclusion: Our findings demonstrate that older adults experience substantial barriers to clinical trial participation. In addition to systemic reasons for not being actively recruited into trials, gaps in knowledge around clinical trial terminology were of concern to many. Tailored educational materials addressing these gaps may help support their understanding of the role of clinical trials in cancer care. These materials should encourage older adults to proactively raise the topic of clinical trials with their healthcare providers early in their care to account for institutional ageism and narrowing of options from comorbidities. Further, we found that nearly all participants faced 1 or more practical barriers to trial access, such as cost and transportation. To attract more older adults, investigators may consider decentralized trials with minimal need for disruptive travel outside a patient’s local area with regular check-ins via telemedicine and/or involvement from a local clinician.

Ethics Statement: This study was conducted under Institutional Review Board–exempt protocols [category 45 CFR 46.101(b) 2].

Acknowledgments: This project was supported by grants from Bristol Myers Squib, Pfizer, and Novartis.

References

  1. Lichtman SM. Call for changes in clinical trial reporting of older patients with cancer. J Clin Oncol. 2012;30:893-894.
  2. White MC, Holman DM, Goodman RA, Richardson LC. Cancer risk among older adults: time for cancer prevention to go silver. Gerontologist. 2019;59(suppl 1):S1-S6.
  3. Hurria A, Dale W, Mooney M, et al. Designing therapeutic clinical trials for older and frail adults with cancer: U13 conference recommendations. J Clin Oncol. 2014;32:2587-2594.
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