Information needs and decision-making processes in older cancer patients

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Abstract

The paper provides an overview of age-differences in patients’ preferences for participation in cancer treatment decision-making and factors that relate to these age-differences. On average, older cancer patients prefer to receive less information about their illness and treatment and assume a less active role in making treatment decisions. They are also less likely to collect and analyze all relevant information in order to make an optimal decision. Observed age-differences are, in part, explained by age-associated cognitive decline. Age-differences are, on average, small to moderate, and most older patients prefer to be well-informed. Nonetheless, only a minority of them wishes to play an active role in decision-making. Given their lower preference for active participation in decision-making, older adults may show less positive psychological effects of active participation, but this question warrants research. Implications for working with older cancer patients are discussed.

Introduction

Patients play an increasingly active role in medical decision-making. The traditional paternalistic physician-patient relationship in which patients are a passive recipient of physician’s decisions has been challenged on the policy level [85] as well as by medical practitioners [74]. Patient participation is seen as a way to increase their autonomy and/or control over treatment decisions [54], [86]. In addition, including patient preferences in medical decision-making helps treatment selection, especially when, from a medical view, no clear treatment preference exists. Participation of patients in treatment decision processes includes physician’s provision of information to the patient on treatment benefits and risks; patient’s provision of information to the physician about his or her values; joint discussion of treatment options; and finding an agreement on the treatment to implement [19].

Making treatment decisions includes collecting and evaluating available information, comparing alternatives, selecting the best alternative, and communicating one’s choice to the physician. Physicians or relatives may be included in the decision process, and decision-making responsibility might even be delegated to others. Treatment options depend upon the site and stage of cancer, comorbidity, financial circumstances (e.g. having a health care insurance that would pay for available therapies). Whether all potentially available options are offered to the patient, and how these options are presented, varies from physician to physician [15], [27], [38], [80]. The process of collecting, evaluating, and weighting information and of choosing an alternative is influenced by patients’ cognitive function (which correlate with their level of educational attainment), communication skills (e.g. when asking the physician for relevant questions), assertiveness, knowledge about cancer, desire for active involvement in their health care, beliefs in the importance of exerting control over the health care encounter, and level of psychological distress [56], [65], [69], [96].

Given age-associated changes in psychological resources for decision-making [83], [96] and motivational processes [94], cohort differences in expectations regarding medical encounters [5], and differences in physician’s communication with older versus younger patients [8], it is likely that there are age-differences in cancer patient participation in decision-making. These differences have implications for clinical practice. In the present review, we discuss age-differences in patients’ needs for information about illness and treatment, preference for active involvement in treatment decision-making, decision-making processes, and the psychological effects of active collaboration in treatment decision-making.

Section snippets

Search for studies

Electronic data bases (MEDLINE, PSYCINFO; search terms: age-differences and cancer and [information or decision]) were searched to yield a comprehensive sample of studies published prior to Autumn 2003, on age-differences in cancer patients’ needs and search for medical information, preferences for participation in treatment decision-making, and ways of participating in such decisions. The ancestry, cross-referencing method was also used to identify studies. Criteria for inclusion of the

Age-differences in information needs and information seeking

Having sufficient information about one’s illness and available treatment options is a necessary precondition for active involvement in treatment decision-making. In general, receiving information about their chance of cure and spread of disease are the patients’ top priorities [23], [27], [55].

However, older cancer patients differ from younger patients in the amount of medical information preferred, in the content of this information, and in the sources of information they use. Cohort

Age-differences in preferences for active participation in treatment decision-making

A clear distinction has to be made between a desire for information and a wish to assume responsibility for decision-making [31]. For many types of cancer the most appropriate management is not always clear, so patients are offered more than one therapeutic option. Treatment decisions also include whether or not to accept treatment, whether to continue with recommended regimes, whether to comply with those regimes or seek other options from within the health care system, or whether to try

Age-differences in the process of participation in treatment decision-making

Too often, patients’ preferences for participation in treatment decision-making are unheeded, but the percentage of patients reporting a match between preferred and perceived actual roles varies considerably between studies. For example, Gattellari et al. [37] reported a match between preferred and perceived roles for 34% of their sample, as compared to 42% [10], 44% [75], 72% [89], 77% [84], and 80% [1] in other studies. Older patients who preferred a passive role were usually most likely to

Age-differences in contents of patients’ treatment decisions

Older patients may not only differ from younger patients in decision processes, but also in treatment choices. Such age-differences have mainly been investigated with regard to decisions for life-sustaining versus quality-of-life enhancing treatments. Studies with hypothetical decision scenarios found that older adults were less willing to accept severe toxicity (reduced quality of life) in exchange for even minimal longer survival time [11], [45], [57], [95]. With regard to actual treatment

Associations between information receipt, participation in treatment decisions, and quality of life

Providing relevant information about cancer and its treatment and involving patients in treatment decision-making may increase patient autonomy and perceptions of control, which could lead to higher levels of psychological well-being [54], [86]. Alternatively, patients may be overwhelmed by the bulk of medical information and the responsibility of making medical decisions. The freedom to choose among medical treatments may be an additional burden, particularly for individuals who are already

Conclusions

In the final part of our paper, we make recommendations for future research and for working with older cancer patients. Six suggestions will be given with regard to future research needs. First, although research has provided interesting insights in the ways older cancer patients deal with medical information and treatment decisions, many available studies have methodological limitations, such as small sample sizes, a lack of established validity and reliability of the measures used, no control

M. Pinquart, Ph.D., is an associate professor at the Department of Developmental Psychology at Friedrich Schiller University of Jena. Main areas of scientific interest are life-span development and gerontology. Since 1999, he does a large longitudinal study on treatment decision-making and psychosocial development in older cancer patients.

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    M. Pinquart, Ph.D., is an associate professor at the Department of Developmental Psychology at Friedrich Schiller University of Jena. Main areas of scientific interest are life-span development and gerontology. Since 1999, he does a large longitudinal study on treatment decision-making and psychosocial development in older cancer patients.

    P. Duberstein, Ph.D., is an associate professor of psychiatry and oncology at the University of Rochester School of Medicine and Dentistry. Areas of interest include diagnosis, treatment, and prevention of mental disorders in older adults in primary care, personality and health across the life course, psychosocial aspects of lung and breast cancer, and suicidology.

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