e24164 Background: Biomarker testing has advanced precision medicine in cancer. However, not all eligible patients benefit from biomarker-driven therapies due to suboptimal testing rates. A working group of 20 patient advocacy groups representing solid/hematologic malignancies, three professional societies, and 18 pharmaceutical and diagnostics companies identified patient confusion inconsistent testing terms as a possible contributing factor to biomarker testing underutilization. The group aimed to address patients’ confusion by identifying and adopting consistent, plain language terms for biomarker and germline genetic testing that are applicable across cancer types. Methods: Following a stakeholder roundtable discussion on barriers to precision medicine, working group members participated in interviews on their goals for consistent testing terminology for their constituents. We then conducted a framework analysis covering five themes: available testing by cancer type; purpose of test; biospecimen source; terms used in patient education; and preferred plain language term. Working group members were surveyed on preferences for germline testing terminology and also deployed a preliminary patient survey to their constituents to gain insight on preferences for germline testing terms. Results: Interviews, framework analysis, and surveys revealed notable differences across cancer communities. We identified at least 33 different terms related to biomarker, genetic and genomic testing being used in patient education and clinical care among the different cancer communities and stakeholders. Terminology was complicated by the variety of testing modalities and gene mutations tested for across cancers. Following multiple discussions, working group members agreed on two umbrella terms to distinguish between somatic and germline testing with additional context for specific cancer communities. “Biomarker testing” was selected as the somatic testing term. “Genetic testing for an inherited mutation” and “genetic testing for inherited cancer risk” were selected as preferred germline testing terms. Conclusions: Our findings highlight the disparate testing terminology landscape and the need for consistent terms to reduce patient confusion, improve communication, facilitate shared decision-making and assure concordance in policy development.
12137 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.
Background: Latina metastatic breast cancer survivors, in particular those of low socioeconomic status, often receive unsatisfactory medical care and experience poor physician-patient communication and relationships.1 Patient education about metastatic breast cancer can improve communication between Latina survivors and caregivers and their health care team.2 This analysis explores participants’ experiences gained from Cancer Support Community’s national evidence-based educational program, Frankly Speaking about Cancer: Cáncer de seno metástatico (Metastatic Breast Cancer). Methods: Frankly Speaking about Cancer (FSAC): Metastatic Breast Cancer is a comprehensive psychosocial educational program that provides information about current treatments, side effect management, and social and emotional challenges of an advanced breast cancer diagnosis. FSAC: Metastatic Breast Cancer was originally created in English and was then translated into Spanish to make the program more accessible to Spanish-speaking metastatic breast cancer survivors and caregivers in the US. 75 participants from 22 workshops across the country between 2018 and 2020 completed program evaluation surveys in Spanish and provided self-reported data on factors including pre- and post-workshop knowledge and intentions for patient-provider communication. Descriptive analyses and pre-and post-workshop comparisons were conducted to assess workshop outcomes. Results: Most workshop participants were metastatic breast cancer patients/survivors (n=46); the remainder served in the caregiving capacity and included spouses/partners (n=19) and family members (n=10). The average age of participants was 61 years old (s.d.= 24.14 years). Among those with metastatic breast cancer, more than half (54%) received the diagnosis within the last two years; and only 29% reported being moderately to highly involved in their treatment decisions. 76% of respondents reported experiencing emotional distress due to their/their loved one’s cancer. Pre- and post-survey results show a significant gain in reported knowledge about metastatic breast cancer (χ²= 13.4, p <.05). Caregivers of Latina metastatic breast cancer survivors also demonstrated a significant gain from pre- to post-workshop in knowledge about metastatic breast cancer treatment options, confidence to participate in treatment decision-making with their health care team, and confidence in asking questions about side effects of metastatic breast cancer and its treatment. As a final point, 68% of cancer patients/survivors and 72% of caregivers reported that because of the workshops, they felt better prepared to emotionally cope with their metastatic breast cancer experience. Discussion: Our findings indicate that educational workshops in Spanish can play a role in enhancing Latina patients’ self-perceived knowledge about metastatic breast cancer and empowering patients and caregivers to become active participants in their treatment decisions. These results underscore the importance of providing culturally specific educational resources to support patients and caregivers in their interactions with their health care team and advance breast health equity among Latinas. Citation Format: Claire Saxton, Maria B. Gonzalo, Richa Ruwala, Kirstin Fearnley, Alyssa Jaisle. Impact of educational workshops on patient-provider communication among Spanish-speaking metastatic breast cancer survivors and their caregivers: Results from the frankly speaking about cancer: Cáncer de seno métastatico evidence-based educational workshops [abstract]. In: Proceedings of the 2020 San Antonio Breast Cancer Virtual Symposium; 2020 Dec 8-11; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2021;81(4 Suppl):Abstract nr PS9-43.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.