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      Decision making during serious illness: what role do patients really want to play?

      Journal of Clinical Epidemiology

      Adult, Age Factors, Aged, Analysis of Variance, Consumer Behavior, Control Groups, Decision Making, Educational Status, Female, Genital Neoplasms, Female, psychology, Genital Neoplasms, Male, Humans, Interviews as Topic, Male, Middle Aged, Neoplasms, Patient Participation, statistics & numerical data, Regression Analysis, Rural Population, Sex Factors

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          Abstract

          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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          Most cited references 14

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          Information and participation preferences among cancer patients.

          The present study explored the degree to which patients prefer to become informed about and to participate in their medical care. A total of 256 cancer patients completed an Information Styles Questionnaire and the Beck Hopelessness Scale. Patients' behavior and beliefs were found to incorporate the contemporary standard of informed and active involvement. Significant age trends were found: The younger the patients, the more closely they conformed to the well-informed participant standard of patient behavior; the older the patients, the more likely they were to prefer the older, nonparticipatory patient role. Patients who wanted to be involved in treatment decisions were significantly more hopeful than others. Most patients in each age group displayed high levels of hope, preferences for open communication about their illness, and a desire for maximum amounts of information.
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            Development of a symptom distress scale.

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              Measuring patients’ desire for autonomy

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                Author and article information

                Journal
                1432023

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