ABSTRACT
Background: Integrative therapies are shown to support cancer patients' treatment plans, help with side effect management, and improve patients' quality of life ([1-9]). In 2017, the American Society of Clinical Oncology endorsed the Association of Integrative Oncology's Clinical Practice Guidelines highlighting their importance in breast cancer care. Recent studies suggest that more evidence is needed to bring attention to the role of integrative therapies in advanced breast cancer care [4, 7, 8, 10]. This analysis explores participants' experiences with a wellness program implemented by Unite for HER (UFH), a non-profit organization that delivers integrative therapies and support services such as whole food nutrition services, medical acupuncture, oncology massage therapy, counseling, reiki, meditation, yoga, and fitness classes to patients with breast, metastatic breast, and ovarian cancer. As of April 2022, there were over 1,700 women diagnosed with metastatic breast cancer (MBC) participating in UFH locally and nationally. Method(s): UFH members completed a survey about the impact of the UFH Wellness Program on the overall quality of life, including measures on side-effect management, OTC/prescription drug utilization rate, stress reduction, changes to wellness habits, and the social and emotional challenges associated with living with MBC. In total, 119 unique UFH members with MBC answered online surveys distributed by email in 2020 and 2021. Survey questions were designed to evaluate the impact of the UFH Wellness Program. Descriptive analyses of survey questions and openended comments were conducted to assess program impact. Result(s): All respondents were MBC patients/survivors. No other demographic information was collected. While 2020 respondents received mostly in-person services for part of their program, all 2021 respondents received primarily virtual services due to the Covid-19 restrictions. Despite the inaccessibility of in-person services, the satisfaction levels with the wellness program did not drop significantly in 2021. More than two-thirds of respondents (80% in 2020, 67% in 2021) indicated that the therapies offered through UFH Wellness Program significantly improved the side effects of their treatment for MBC. Notably, more than a quarter of respondents (28% in 2020, 26% in 2021) specified that due to UFH integrative therapies they were able to reduce or eliminate one or more OTC/prescription drugs to manage side effects. At the same time, the majority reported experiencing reduced levels of stress after utilizing integrative therapies offered by UFH (93% in 2020, 81% in 2021), as well as improvements in their emotional wellbeing (95% in 2020, 83% in 2021), and quality of life during or after treatment for MBC (97% in 2020, 96% in 2021). Also, 86% of respondents in both years indicated that UFH services, such as nutrition counseling, cooking classes, and exercise classes, helped them adopt and maintain healthier habits in their life. Furthermore, a qualitative analysis of open-ended comments found that 1) respondents expressed deep gratitude and appreciation for UFH integrative therapies, 2) noted that they would otherwise not be able to access such therapies due to financial barriers, and 3) helped them feel better prepared to cope with the psychosocial aspects of their MBC experience. Discussion(s): These results suggest that integrative therapies such as those offered by UFH can play a significant role in improving patients' outcomes by reducing stress and drug utilization to manage side effects and improving patients' well-being and quality of life during metastatic breast cancer treatment. These findings highlight the importance of choosing integrative oncology programs to support MBC patients' needs in managing the psychosocial and physical side effects of the disease.
ABSTRACT
Background: Currently, Black patients make up 20% of people living with multiple myeloma, yet they represent only 6% of participants in clinical trials.1 The underrepresentation of Black patients in clinical trials can contribute to outcome disparities thereby negatively impacting health equity in cancer treatment and outcomes.2 This project examined attitudes towards clinical trials among Black multiple myeloma patients and caregivers. Findings will inform the development of programs aimed at increasing clinical trial participation in this population. Methods: In 2021, the Cancer Support Community conducted an online survey to gain insights on barriers, facilitators, and perceptions of clinical trials among Black multiple myeloma patients and caregivers/care partners. Survey questions were informed by insights from prior focus groups. 94 patients and 101 caregivers were surveyed. Results: Most participants were male (62%) and African American (90%). 5% identified as African Caribbean and 5% as Black and Hispanic. The average age was 46 years. Just over half (51%) currently or previously participated in clinical trials. Of those who chose not to participate in a trial, the most common reasons were fear of side effects (46%) and fear of receiving a placebo (38%). Another barrier to participation reported was discomfort with being randomly assigned to a treatment (56%). Participants reported a significant level of distrust in medical research and doctors, saying that it was “very or somewhat likely” that doctors provide treatment as part of an experiment without patient consent (41%) and that they might be used as a “guinea pig” (25%). Of note, 57% of respondents said COVID had changed their attitude towards participating in clinical trials. 14 of 16 factors mentioned in our focus groups were affirmed by more than half of respondents as facilitating participation in a clinical trial. The top factors were: Understanding potential side effects (66%) My health care team speaks to me about trials (65%) Compensation offered for transportation, childcare, or time off work (62%) My family/community support my decision (61%). Conclusions: These findings are consistent with previous research which found that cancer patients reported the biggest attitudinal barriers to clinical trial participation were fear of side effects, distrust in medical research, and random assignment to clinical trial groups.3 Our study highlights that Blacks and African Americans living with multiple myeloma value multifactorial efforts to increase clinical trial participation: logistical and financial interventions, patient/provider communication, and culturally sensitive support and education programs. These programs can also work to improve health equity by reducing barriers to overall care and encouraging Blacks and African Americans living with multiple myeloma to be active members of their health care team.