Antonio Noguera1, Sriram Yennurajalingam2, Isabel Torres-Vigil3, Henrique Afonseca Parsons2, Eva Rosina Duarte4, Alejandra Palma5, Sofia Bunge6, J Lynn Palmer7, Eduardo Bruera8. 1. Department of Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA; Hospital Centro de Cuidados Laguna, Madrid, Spain. 2. Department of Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA. 3. Department of Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA; Dorothy I. Height Center for Health Equity & Evaluation Research, University of Houston Graduate College of Social Work, Houston, Texas, USA. 4. Instituto de Cancerologia, Guatemala City, Guatemala. 5. Pontificia Universidad Catolica de Chile, Santiago, Chile. 6. Palliative Care Unit, Hospital Tornu, Programa Argentino de Medicina Paliativa-Fundación FEMEBA, Buenos Aires, Argentina. 7. Department of Biostatistics, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA. 8. Department of Palliative Care and Rehabilitation Medicine, The University of Texas M. D. Anderson Cancer Center, Houston, Texas, USA. Electronic address: ebruera@mdanderson.org.
Abstract
CONTEXT: Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. OBJECTIVES: The aims of this study were to describe DCPs, disclosure of information, and satisfaction with decision making among Hispanics and to determine the degree of concordance between patients' DCPs and their self-reported decisions. METHODS: We surveyed 387 cancer patients referred to outpatient palliative care clinics in Argentina, Chile, Guatemala, and the U.S. DCPs were measured with the Control Preference Scale, disclosure preferences with the Disclosure of Information Preferences questionnaire, and satisfaction with care with the Satisfaction with Decision Scale. RESULTS: In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their diagnosis and prognosis, 345 (92%) patients wanted to know their diagnosis, and 355 (94%) wanted to know their prognosis. Three hundred thirty-seven (87%) patients were satisfied with the decision-making process. DCPs were concordant with the self-reported decision-making process in 264 (69%) patients (weighted kappa = 0.55). Patients' greater satisfaction with the decision-making process was correlated with older age (P ≤ 0.001) and with a preference for enhanced diagnostic disclosure (P ≤ 0.024). Satisfaction did not correlate with concordance in the decision-making process. CONCLUSION: The vast majority preferred a shared or active decision-making process and wanted information about their diagnosis and prognosis. Older patients and those who wanted to know their diagnosis seemed to be more satisfied with the way treatment decisions were made.
CONTEXT: Studies to determine the decisional control preferences (DCPs) in Hispanic patients receiving palliative care are limited. OBJECTIVES: The aims of this study were to describe DCPs, disclosure of information, and satisfaction with decision making among Hispanics and to determine the degree of concordance between patients' DCPs and their self-reported decisions. METHODS: We surveyed 387 cancerpatients referred to outpatient palliative care clinics in Argentina, Chile, Guatemala, and the U.S. DCPs were measured with the Control Preference Scale, disclosure preferences with the Disclosure of Information Preferences questionnaire, and satisfaction with care with the Satisfaction with Decision Scale. RESULTS: In this study, 182 patients (47.6%) preferred shared decisional control, 119 (31.2%) preferred active decisional control, and 81 (21.2%) preferred a passive approach. Concerning their diagnosis and prognosis, 345 (92%) patients wanted to know their diagnosis, and 355 (94%) wanted to know their prognosis. Three hundred thirty-seven (87%) patients were satisfied with the decision-making process. DCPs were concordant with the self-reported decision-making process in 264 (69%) patients (weighted kappa = 0.55). Patients' greater satisfaction with the decision-making process was correlated with older age (P ≤ 0.001) and with a preference for enhanced diagnostic disclosure (P ≤ 0.024). Satisfaction did not correlate with concordance in the decision-making process. CONCLUSION: The vast majority preferred a shared or active decision-making process and wanted information about their diagnosis and prognosis. Older patients and those who wanted to know their diagnosis seemed to be more satisfied with the way treatment decisions were made.
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