June 13 2024
Article by Marlyn Molero & Tambre Leighn, Co-Vice Chairs of NRG Oncology’s Patient Advocate Committee
June is a time of dual significance in the cancer community as we celebrate National Cancer Survivors Month and Uterine Cancer Awareness Month. For those of us on the Patient Advocate Committee, this is a moment to reflect on the unique challenges faced by uterine cancer survivors particularly within the context of clinical trials. While significant strides have been made in the treatment of uterine cancer, survivors continue to navigate a complex landscape of physical, emotional, and social challenges that deserve attention from the research community.
Uterine cancer survivors often struggle with a range of long-term side effects from treatments. These side effects can include hormonal imbalances, fatigue, pain, and issues related to sexual health and fertility. Being thoughtful about incorporating these survivorship issues into study designs can help ensure not only that research is advancing treatments but that it is also improving the quality of life for survivors. By considering these aspects, researchers can make significant strides in addressing the comprehensive needs cancer patients.
The impact of uterine cancer on daily life and work is another consideration. Many survivors face difficulties in returning to work or managing daily activities because of the effects of treatment. Exploring interventions that can help survivors reintegrate into their normal routines, addressing issues such as cognitive function, energy levels, and physical mobility as part of clinical research ensures that quality of life, not just treatment of the disease, is improved. Designing flexible study protocols that accommodate participants' varied schedules and needs can also help address some of the practical challenges of participating in a clinical trial.
Given NRG Oncology’s commitment to continuing efforts to improve diversity in clinical trials, it is also important to be aware of unique considerations and concerns related to cultural and other factors. In particular, patients with uterine cancer from underrepresented communities often face numerous barriers when it comes to enrolling in clinical trials. One major barrier is the lack of awareness and understanding about clinical trials among both patients and healthcare providers. Many patients are not informed about available trials, or they may have misconceptions about the risks and benefits involved.
Cultural and linguistic differences can also pose significant challenges. Patients from diverse backgrounds may have language barriers that make it difficult to understand trial protocols or communicate effectively with researchers. Additionally, cultural beliefs about medicine and healthcare can influence willingness to participate. For example, some patients might prefer traditional healing practices, or they may have distrust towards the medical system based on past experiences of discrimination or mistreatment.
Socioeconomic factors play a crucial role as well. Patients who come from low-income backgrounds may lack the financial resources to participate in trials. The cost of travel, lodging, and time off work can be prohibitive. Furthermore, they might not have access to healthcare facilities that conduct clinical trials, particularly in rural or underserved urban areas.
Religious and spiritual beliefs can also impact decisions. Some patients may believe that participating in a clinical trial conflicts with their faith or spiritual practices. For instance, they might be concerned about the use of certain medications or treatments. Others may not feel comfortable discussing symptoms, side effects, or even the disease itself, particularly for gynecological cancers like uterine cancer. This may also be the case for transgender patients as well. Researchers, clinicians, and patients can greatly benefit from the fostering of a safe and supportive environment for all patients. Empathetic communication, such as actively asking patients what will help them feel more comfortable during tests, procedures, examinations, and discussions about their disease plays a significant role in reducing anxiety and creating a sense of safety and respect.
Trust is another critical issue. Historical abuses in medical research have left lasting scars in many communities leading to a deep-seated mistrust of clinical trials and the medical establishment. This mistrust can be particularly pronounced among minority populations, making them less likely to enroll in clinical trials.
Increasing awareness and education about clinical trials in diverse communities, providing translation and interpretation services, ensuring financial support for participants, and building trust through community engagement and transparent communication are essential steps.
Addressing clinical trial barriers requires a multifaceted approach, including involving patient advocates early and often throughout the clinical research process. National Cancer Survivors Month is the perfect time to remember that the members of the Patient Advocate Committee are here to provide support and insights to researchers based on personal lived experiences and our collective experience as advocates.
By working together to overcome these unique barriers, NRG Oncology researchers and patient advocates can help to continue to drive more diversity in in clinical trials so more people can benefit from advancements in cancer treatment.
For more information on the Patient Advocate Committee, click here.