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      Self-reported preferences for patient and provider roles in cancer treatment decision-making in the United States

      Family Medicine and Community Health

      Family Medicine and Community Health & American Chinese Medical Education Association

      treatment decision-making, decision-making role preference, Cancer

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          Objective: To describe differences in preferred roles in cancer treatment decision-making and identify associated sociodemographic and health-related factors among adults in the United States. Methods: We conducted a cross-sectional analysis of nationally representative data from the 2014 Health Information National Trends Survey. Descriptive statistics were calculated and multivariable logistic regression was conducted to examine associations. Results: Half (48.3%) of respondents preferred a collaborative role in decision-making under the supposition of a moderate chance of survival; while 53.4% preferred a more active role when the chance of survival was low. Approximately 7%–8% indicated a preference for a passive role in decision-making, for both low and moderate chances of survival. Several predictors of role preference for cancer treatment decision-making emerged, including age, sex, education, race/ethnicity, and having a regular health care provider. At both low and moderate chances of survival, the college educated were less likely to prefer a passive role, whereas Hispanics were two to three times more likely than whites to indicate a preference for a passive role. Conclusion: Adults’ role preference for cancer treatment decision-making may be influenced by sociodemographic and health-related factors. Increased awareness of these factors, paired with enhanced patient–provider communication, may assist health care professionals in providing individualized and high-quality, patient-centered cancer care.

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          Most cited references 99

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          Doctor-patient communication: a review of the literature.

          Communication can be seen as the main ingredient in medical care. In reviewing doctor-patient communication, the following topics are addressed: (1) different purposes of medical communication; (2) analysis of doctor-patient communication; (3) specific communicative behaviors; (4) the influence of communicative behaviors on patient outcomes; and (5) concluding remarks. Three different purposes of communication are identified, namely: (a) creating a good inter-personal relationship; (b) exchanging information; and (c) making treatment-related decisions. Communication during medical encounters can be analyzed by using different interaction analysis systems (IAS). These systems differ with regard to their clinical relevance, observational strategy, reliability/validity and channels of communicative behavior. Several communicative behaviors that occur in consultations are discussed: instrumental (cure oriented) vs affective (care oriented) behavior, verbal vs non-verbal behavior, privacy behavior, high vs low controlling behavior, and medical vs everyday language vocabularies. Consequences of specific physician behaviors on certain patient outcomes, namely: satisfaction, compliance/adherence to treatment, recall and understanding of information, and health status/psychiatric morbidity are described. Finally, a framework relating background, process and outcome variables is presented.
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            Decision making during serious illness: what role do patients really want to play?

             L Degner,  D. J. Sloan (1992)
            Two surveys were conducted to determine what roles people actually want to assume in selecting cancer treatments. 436 newly diagnosed cancer patients and 482 members of the general public participated. Preferences were elicited using two card sort procedures, each of which described five potential roles in decision making. Findings suggested that the impact of being diagnosed with a life-threatening illness may influence preferences to participate. The majority (59%) of patients wanted physicians to make treatment decisions on their behalf, but 64% of the public thought they would want to select their own treatment if they developed cancer. Most patients (51%) and members of the public (46%) wanted their physician and family to share responsibility for decision making if they were too ill to participate. Sociodemographic variables accounted for only 15% of variance in preferences. These variables are not particularly useful in making predictions about which groups want more or less active roles in medical decision making.
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              Information needs and decisional preferences in women with breast cancer.

              To determine the degree of involvement women with breast cancer wanted in medical decision making, extent to which they believed they had achieved their preferred level of involvement, and types of information they judged to be most important. Cross-sectional survey at 2 tertiary oncology referral clinics and 2 community hospital oncology clinics in Winnipeg, Manitoba. Consecutive sample of 1012 women with a confirmed diagnosis of breast cancer who were scheduled for a visit at 1 of 4 hospital oncology clinics. The following measures were used: (1) Preferences about various levels of participation in treatment decision making; (2) the extent to which subjects believed they had achieved their preferred levels of involvement in decision making; and (3) priority needs for information and how these needs differed by selected sociodemographic, disease, and treatment variables. A total of 22% of women wanted to select their own cancer treatment, 44% wanted to select their treatment collaboratively with their physicians, and 34% wanted to delegate this responsibility to their physicians. Only 42% of women believed they had achieved their preferred level of control in decision making. The 2 most highly ranked types of information were related to knowing about chances of cure and spread of disease. Women younger than 50 years rated information about physical and sexual attractiveness as more important than did older women (P<.001); women older than 70 years rated information about self-care as more important than did younger women (P=.002); and women who had a positive family history of breast cancer rated information about family risk as more important than did other women (P=.03). The substantial discrepancy between women's preferred and attained levels of involvement in treatment decision making suggests that systematic approaches to assess and respond to women's desired level of participation in treatment decision making need to be evaluated. Priorities for information identified in this study provide an empirical basis to guide communication with women seeking care for breast cancer.

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