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

Julia Meguro; Mariana Khawand-Azoulai; Heidy N Medina; Magela Pons; Michael T Huber; Frank J Penedo; Patricia I Moreno

doi:10.1002/pon.70145

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

Psychooncology. 2025 Apr;34(4):e70145. doi: 10.1002/pon.70145.

Authors

Julia Meguro¹, Mariana Khawand-Azoulai², Heidy N Medina³, Magela Pons³, Michael T Huber², Frank J Penedo^{1

4}, Patricia I Moreno³

Affiliations

¹ Department of Medicine, University of Miami Miller School of Medicine, Miami, Florida, USA.
² Department of Medicine, Division of Geriatrics and Palliative Medicine, University of Miami Miller School of Medicine, Miami, Florida, USA.
³ Department of Public Health Sciences, University of Miami Miller School of Medicine, Miami, Florida, USA.
⁴ Department of Psychology, University of Miami, Coral Gables, Florida, USA.

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.

Keywords: Hispanic; Latino; cancer; metastatic cancer; oncology; patient activation.

MeSH terms

Adult
Aged
Communication Barriers
Decision Making*
Decision Making, Shared*
Female
Focus Groups
Hispanic or Latino* / psychology
Humans
Male
Middle Aged
Neoplasm Metastasis
Neoplasms* / ethnology
Neoplasms* / pathology
Neoplasms* / psychology
Neoplasms* / therapy
Palliative Care / psychology
Patient Participation* / psychology
Qualitative Research
Quality of Life
White

Grants and funding

K01CA258955/CA/NCI NIH HHS/United States