Decisional Control Preferences, Disclosure of Information Preferences, and Satisfaction Among Hispanic Patients With Advanced Cancer

• Published in: Journal of pain and symptom management 2014-05, Vol.47 (5), p.896-905
• Main Authors: Noguera, Antonio, MD, Yennurajalingam, Sriram, MD, MS, Torres-Vigil, Isabel, DrPH, Parsons, Henrique Afonseca, MD, MS, Duarte, Eva Rosina, MD, Palma, Alejandra, MD, Bunge, Sofia, MD, Palmer, J. Lynn, PhD, Bruera, Eduardo, MD
• Format: Article
• Language: English
• Subjects: Adult; advanced cancer; Aged; Aged, 80 and over; Anesthesia & Perioperative Care; Argentina; Biological and medical sciences; Chile; Cross-Sectional Studies; Decision Making; decisional control preferences; Diagnosis; Disclosure; disclosure of information preferences; Female; Guatemala; Hispanic Americans - psychology; Hispanic Americans - statistics & numerical data; Hispanic people; Humans; Male; Medical sciences; Middle Aged; Multiple tumors. Solid tumors. Tumors in childhood (general aspects); Neoplasms - diagnosis; Neoplasms - ethnology; Neoplasms - psychology; Neoplasms - therapy; Pain Medicine; Palliative care; Palliative Care - psychology; Palliative Care - statistics & numerical data; Patient Participation - statistics & numerical data; Patient Satisfaction - ethnology; Patient Satisfaction - statistics & numerical data; Pharmacology. Drug treatments; Preferences; Prognosis; Self Report; Tumors; United States; Young Adult
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2013.06.010

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.