Patient Activation and Shared Decision-Making Among Hispanics/Latinos With Metastatic Cancer: A Qualitative Study

Abstract

Background: Patient activation is established when patients are equipped with the necessary knowledge, skills, and motivation to meaningfully participate in managing their health and, along with shared decision-making, improves clinical outcomes like treatment adherence. Little is known regarding patient activation among Hispanics/Latinos with metastatic cancer, who report worse quality of life and symptom burden compared to non-Hispanic/Latino Whites. Aims: This study aimed to characterize barriers and facilitators to patient activation and shared decision-making among English- and Spanish-speaking Hispanics/Latinos with metastatic cancer. Methods: Three, 2-h focus groups with Hispanics/Latinos with metastatic solid tumors (N = 22) were audio-recorded and transcribed. Semi-structured interviews addressed experiences living with metastatic cancer, palliative care beliefs, and communication with healthcare team. Barriers and facilitators were identified through secondary analysis of interviews. Results: Barriers included: (a) feeling overwhelmed by treatment decision-making; (b) lack of clarity regarding treatment and diagnosis; (c) lack of symptom management resources; and (d) concerns regarding English fluency and medical terminology. Facilitators included: (a) self-advocacy for treatment options and quality of life resources; (b) feeling comfortable asking care team questions; (c) having a skilled support system; and (d) avoiding unhelpful medical information. Patient activation levels varied, but all participants expressed a desire to be proactively included in decisions throughout care. Conclusions: Results suggest that patient activation may be promoted in this population through the provision of information/resources that are timely, accessible, and relevant to their care needs and active inclusion of patients in decision-making. Findings will guide culturally-adapted interventions that increase patient activation and shared decision-making.