Information needs and decision-making processes in older cancer patients

Critical Reviews in Oncology/Hematology 51 (2004) 69–80

Information needs and decision-making processes in older cancer patients Martin Pinquart a,∗ , Paul R. Duberstein b a

Department of Developmental Psychology, Friedrich Schiller University, Am Steiger 3 Haus 1, D-07743 Jena, Germany b University of Rochester Medical Center, 300 Crittenden Boulevard, Rochester, NY 14642, USA

Contents Abstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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1.

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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2.

Methods. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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2.1.

Search for studies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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2.2.

Measurement of information needs, involvement in treatment decisions, and patient decision-making. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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3.

Age-differences in information needs and information seeking . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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4.

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

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5.

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

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6.

Age-differences in contents of patients’ treatment decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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7.

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

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8.

Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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References. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Biographies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

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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. © 2004 Elsevier Ireland Ltd. All rights reserved. Keywords: Medical decision-making; Patients’ preferences; Information needs; Age-differences; Quality of life

1. 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 ∗ Corresponding author. Tel.: +49-3641-945210; fax: +49-3641-945202. E-mail addresses: [email protected] (M. Pinquart), paul [email protected] (P.R. Duberstein).

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

1040-8428/$ – see front matter © 2004 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.critrevonc.2004.04.002

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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.

2. Methods 2.1. 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 studies in the review were: 1. Some of the cancer patients were 60 years of age or older. 2. Age differences in information needs/information search, preferences for involvement in treatment decisions, or decision behavior of the patients were reported by compar-

ing older patients (in most cases 60+ years or 65+ years) against younger patients, or by reporting correlations of these variables with age. 3. Information was available whether age-differences were statistically significant. 2.2. Measurement of information needs, involvement in treatment decisions, and patient decision-making Different methods have been used to assess information needs, preferences for participation in treatment decisionmaking, the decision-making process, and the contents of those decisions. Information needs are usually assessed by asking patients whether they would like to receive medical information from health care professionals. Few studies have asked about specific sources of information, such as from medical and non-medical sources (e.g. newspapers, friends, and television [88]), or from the Internet [61,93]. Items focus on information about cancer (e.g. causes and progress of illness), as well as on effects and side effects of therapy. In addition, preferences for positive and negative information have been assessed. Most available studies used the information styles questionnaire [15] and its modifications [32,46,59]: its first question focused on preferences for good versus bad cancer-related information, and an additional 12 items concern the type of preferred information (Table 1). Other measures are summarized in Table 1. The items have face validity, but criterion-related validity had not been tested and the association between information preferences and information search (e.g. asking questions to the physician) is unknown. In addition, as no information about internal consistency of the scales is provided, it is unclear whether needs for information about illness, treatment options, treatment effects, and side effects load on one common factor. With regard to patients’ preferences for participation in decision-making, the most commonly used assessment is a card sort task describing five possible roles of patients in decision making [26]. The procedure involves showing each patient five cards (two at a time) each of which describe a possible role. An order of preferences is thereby established [5,10,26,27,40,75,89]. In other studies, two items from the information styles questionnaire [9,15] and similar short questionnaires [56,66] were used (Table 1). Whereas the card sort tasks measures three styles of participation (active, collaborative, and passive role), other measures only differentiate between an active and a passive style [15]. The questionnaires have face validity. Nonetheless, information on psychometric properties is only available for the card sort task [26]. Decision processes have been assessed with qualitative interviews and questionnaires. In two studies, semistructured interviews were used for identifying decision-making styles [66,68]. Information on reliability and validity were reported for one measure [66]. A multi-choice question was used in a third study [60] and a fourth used a 20-item questionnaire [70] that assesses four decision styles, based on the decision-

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Table 1 Selected measures of information needs, preferences for participation in treatment decision-making, and decision-making behavior Source

Method and sample items

Psychometric properties

Information needs Information styles questionnaire [15]

Avoidance of negative information (three items):

Not reported

Want (a) only the information needed to care for themselves; (b) additional information only if it is good news; and (c) as much information as possible, good and bad Assessment of types of information (12 items): Information about illness (e.g. whether or not it is cancer, what the specific name of the illness is, whether it is inherited or contagious) Information about treatment effects and side effects (e.g. what the treatment will accomplish, what all the possible side effects are, and day-to-day or week-to-week progress) Toronto information needs questionnairebreast cancer [36]

Fifty-one Likert-type items from five domains of information needs (diagnosis, investigative tests, treatments, physical, psychosocial)

Content validity assessed by experts, Cronbach’s α = 0.78–0.88

Information questionnaire [34]

Fifty-nine items of information on prostate cancer (e.g. chances of cancer disappearing, life-expectancy with treatment, treatment options if initial treatment fails, side effects)

Not reported

Preference for involvement in treatment decision-making Card sort task [26] Five cards, two reflecting patients’ active role: (A) I prefer to make the final selection about which treatment I will receive; (B) I prefer to make the final selection of my treatment after seriously considering my doctor’s opinion), one a collaborative role; (C) I prefer that my doctor and I share responsibility for deciding which treatment is best for me), and two patients’ passive role; (D) I prefer that my doctor makes the final decision about which treatment will be used, but seriously considers my option; (E) I prefer to leave all decisions regarding my treatment to my doctor) Information styles questionnaire [15]

Two items on preferences for participation in treatment decision:

High internal consistency

Not reported

I prefer to leave decisions about my medical care and treatment up to my doctor I prefer to participate in decision about my medical care and treatment Decision making control [56]

Three items: want to make the decision on one’s own, wish to share decision with someone else, want to delegate decision

Not reported

Patient decision making right scale [41,91]

Three items: a patient should be allowed to leave the hospital even though the doctor does not agree. A patient should make the final decision concerning therapy, even if the decision is to refuse treatment. When a person is in the last stages of an incurable illness, the patient or his family should decide if further treatment should be continued

Not reported

Decision-making behavior Qualitative interview Identification of decision styles based on grounded theory: deferrers, delayers, [68] deliberators Decisional processing questionnaire [66]

Structured interview coded by trained judges

Not reported Reliability tested by inter-rater agreement, validity tested by similarity to prototypical vignettes

Decision-styles: information-seeking, information processing, advice-following, ruminating Multi-choice question [60]

Participants select on of four options: (a) I must hurry and make a decision before the cancer spreads; (b) I need to learn all I can about my type of cancer and available treatment options; (c) I need to get a second or third option; (d) I need time to reflect on what my doctor told me before making a decision

Not reported

Decision-making questionnaire [70]

Four scales with five Likert-type items Unconflicted change: e.g. I asked the physician to make the treatment decision because he/she knows the subject Defensive avoidance: e.g. I did not want to decide anything, because such a decision would have been to stressful for me Vigilant decision-making: e.g. I carefully weighed the pros and cons, before making the treatment decision Hypervigilant decision making: e.g. I was looking for the fastest and simplest decision

Cronbach’s α = 0.59 (hypervigilance) to 0.78 (unconflicted change), factorial validity

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making theory by Janis and Mann [44]. The scales of the fourth study have moderate internal consistency, and the empirically-obtained factor structure matched theoreticallydriven descriptions of the constructs (Table 1). Contents of treatment decisions have most often been assessed with single-item indicators asking for the treatment option chosen (e.g. with regard to breast cancer: mastectomy versus breast conservation surgery [49,64,81,90]). In addition, contents of fictive treatment decisions have been measured with decision dilemmas asking patients to trade quality of life for an increased survival advantage [11,45,57,95]. However, it is less clear how observed decision behavior in fictitious decision dilemmas can be generalized to real-life treatment decision-making where consequences are often difficult to be foreseen. It is very likely that item contents influence the mean levels or percentages of patients who want to receive particular information or participate actively in treatment decisionmaking [2]. For example, patients are more interested in knowing the chance of cure and probable side effects of therapy than the specific medical name of the illness [15]. However, it is less clear how different measures may influence observed age-differences in information needs, preferences for participation in treatment decision making, and decision behavior. As single-item indicators are less reliable than sum-scales, they may show lower correlations with age than sum-scales. In addition, age-differences in information needs, preferences for participation in decision-making, and decision-behavior are probably more likely to be found when using indicators with moderate levels of item difficulty.

3. 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 differences (experiences with paternalistic health care, older adults’ lower educational level), age-associated cognitive decline, age-differences in the availability of information about cancer from the informal social network, and age-differences in motivation may relate to age-differences in the need for medical information (Table 2). Nonetheless, age-differences in the motivation to seek new information would be less pronounced in cancer patients as both older and younger patients adopt their needs to the perceived limited time left to live [14]. Several studies showed that older patients (60+ or 65+ years) were less likely to say that they wanted a large amount of medical information from their physician

[9,15,36,43,67,88]. For example, Jenkins et al. [46] found that older cancer patients (70+ years) were less interested than younger patients in the special medical name of their illness, in knowing whether they have cancer, in all available treatments, possible side effects, the chances to cure, and how the treatment works. However, age explained less than one percent of the variance of the information needs, and even in the oldest group (70+ years), 81% of the patients wanted as much information as possible. Indeed, some studies found no significant age-differences in information needs [13,32,34,59]. The heterogeneity of reported age-differences in information needs may, in part, be based on sample characteristics, such as the age-distribution of the participants. For example, the study by Feldman-Stewart et al. [34], which found no age-differences, had a smaller age-range than most other studies. In addition, the results may vary by research methods, as for example, the FeldmanStewart study [34] asked for the perceived importance of different information for patients’ treatment decision whereas most other studies more directly asked whether the patients would like to receive the particular information. Age-differences in information needs also vary by topic and source of information, but such effects have rarely been investigated. In two studies, older breast cancer patients (50+ years) rated information about physical appearance and sexual attractiveness as less important as did younger patients [27,89]. However, older women (70+ years) rated information about self-care as more important than their younger peers [27]. These effects probably reflect agedifferences in developmental tasks and age-associated physical changes: due to age-associated changes in physical appearance and health it becomes increasingly difficult to maintain high aspirations regarding attractiveness, whereas worries regarding future health care needs become more important (e.g. [29,35]). In addition, the age-associated increase in the percentage of widowed women and the decline of the importance of the sexual dimension in the conjugal relationship in old age [87] probably contribute to older women’s declining needs for information on the consequences of cancer and cancer therapy for sexual attractiveness. Only one study analyzed age-differences in the use of sources of information [88]. Information seeking from their physician decreased with age, but seeking information from non-medical sources, such as newspapers, television, and friends, increased with age, particular in individuals with high levels of desire for information. Older adults’ selfperceived knowledge of cancer was positively correlated with information-seeking from non-medical but not medical sources. Thus, older patients may not have lower general information needs, but may seek information from different sources, for example, because physicians spend less time with older than younger patients and provide less information to them [8], because older patients feel more passive and deferent to health care professionals [83], because they have difficulties understanding the medical language of the

Table 2 Factors that may contribute to older patients’ information needs and participation in cancer treatment decisions Factors Older adults have grown up in a culture where a paternalistic style of making treatment decisions was common [6,46,67,94] Older adults are more likely to believe that cancer will lead to death (cancer fatalism [72]) Older adults have more problems in understanding medical information and participating in complex decisions because of their lower educational attainment [5]

Preferences for participation in treatment decision

Decision processes

Want less information

Stronger preference for passive (paternalistic) style

More likely to show passive and less likely to show vigilant decision-making

Perceive information as worthless

Stronger preference for passive style Stronger preference for passive style

Want less information, prefer easily understandable information

Age-associated cognitive decline

Cognitive decline limits processing and memorizing of complex information [60,96]

Want less information

Age-associated motivational changes

Older adults are less likely to seek social contact that provides new information [14] There is an age-associated shift from strivings to improve one’s situation (primary control) to psychologically adapting to one’s circumstances (secondary control) [79] Older adults may wish to conserve their limited cognitive and emotional resources [94]

Want less information

Age-differences in social network

Older adults may have more same-aged friends and family members who have experienced cancer [88]

Collect less information from medical sources and more information from non-medical sources

Age-differences in health-related locus of control Age-differences in coping/control strategies

More likely to show passive or hypervigilant decision-making, less vigilant decision-making

Stronger preference for passive style

Need more time for processing, more likely to show passive or hypervigilant decision-making

Stronger preference for passive style

More likely to show passive decision-making

Stronger preference for passive style

More likely to show passive decision-making

Older adults may be less likely to believe in their abilities to influence their illness [56]

Stronger preference for passive style

More likely to show passive decision-making

Passive behavior helps to gain control over social contacts, because passivity and helplessness elicits support from health care professionals [4]

Stronger preference for passive style

More likely to show passive decision-making

Want less information

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Cohort differences in experiences with the medical system and in educational attainment

Information needs

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physician [8], or because they may have more same-aged friends who have cancer [88]. In addition, many older adults may prefer to seek information from friends or family members rather than from the physician, because the former are more likely to address their emotional needs [14]. Further, older patients are less likely to use the Internet as source of information and support [61,93].

4. 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 decisionmaking [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 unproven methods [39]. At least three ways of making treatment decisions have been described: in paternalistic decision-making, the physician decides on treatment implementation, accompanied by a largely one-way exchange of information from physician to patient which is focused on medical information, and patients take a passive role. In shared decision-making or collaborative decision-making, both the physician and patient are involved in the decision process by expressing treatment preferences and reaching an agreement regarding the treatment decision. Finally, patients may assume the primary responsibility in making a treatment decision based on the medical information they received from their physician (active role or informed decision [16,17,18,53]). Results of studies on cancer patients’ preferences for participation in treatment decisions are considerably heterogeneous, in part based on differences in the methods used to assess preferences, and differences between samples (e.g. regarding the stage and type of cancer or sociodemographic characteristics). For example, about half of the available studies indicate that 50–60% of cancer patients prefer a passive role in medical decision-making (although single studies found this preference in less than 10% of the participants [56]). On average, about 30% of the patients preferred a collaborative role (with a variation from 23 to 64%), and about 25% an active role (with variations from 1 to 54%), see, for example [5,26,48,56]. Cohort-specific experiences with the paternalistic model of health care as well as age-differences in cognitive function, other psychological resources, health-related locus of control, and in coping strategies may limit older adults’ preference for active participation in treatment decision-making (Table 2). Most studies found that older patients were more likely to prefer a passive role in cancer treatment decisionmaking [9,17,27,53,54,67,77,89], some of them even after statistically controlling for educational attainment [15,67].

For example, in one study, many older patients (60+ years) rejected active role in treatment decisions because “laymen are not qualified to make such decisions” or “because it is the doctor’s job to make such decisions” [15]. However, age-differences were usually small to moderate, and even in the oldest group, a larger percentage (51%) preferred some participation. Similarly, Degner et al. [27] found that about 52% of their older patients (70+ years) preferred some participation in treatment decision-making (active role: 13%, collaborative role: 38%), as compared to 79% of patients younger than 50 years (active role: 31%, collaborative role: 48%). Few studies found no significant age-differences in the preference for participation in treatment decision-making [7,10,25,40,75]. However, these studies had small samples of older participants, so that only large age-differences would have become statistically significant.

5. 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 see their expectations fulfilled. They report less actual involvement in medical decision-making [21,22,52,64,66,71,91], although not all studies observed significant age-differences in participation in decision-making [1]. Older patients (70+ years) received less encouragement from their physician to participate actively in treatment choice than middle-aged patients [38], and older cancer patients (65+ and 70+ years, respectively) perceived themselves as less assertive in telling physicians what they wanted [83] and getting physicians to adjust their treatment plans to meet their needs [67]. Age-differences in the interpretation and processing of medical information may also have implications for participation in treatment decision-making. Before discussing these age-differences, we give a short overview of research on treatment decision-making under stress. Making treatment-decisions is often a difficult process. When experiencing high levels of anxiety and grief following a cancer diagnosis, feeling pressured to make a difficult treatment decision in a very short time interval, or experiencing the effects of analgesics and other medications, patients may not be able to process all relevant information in order to reach the best decision [30]. In one study, only 50% of breast cancer patients said that they could think clearly at the time of decision-making [56]. The conflict model of decisionmaking [44] outlines five styles of decision-making. In the case of defensive avoidance, people avoid having to choose

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through procrastination, seeking others who will take responsibility for the decision, or rationalizing why no choice is needed, rather than searching for options and making a decision. With regard to unconflicted change, the decision maker uncritically adopts the choice that is most strongly recommended by others, or that is otherwise salient, without collecting information or comparing options. In hypervigilant decisions, the individual searches frantically for a way out of the decisional dilemma and impulsively seizes upon a hastily contrived solution that seems to promise immediate relief. In this case, the full choice of options is usually not considered, and the individual may not choose the best option. The vigilant (or rational) decision maker intensively searches for new information and takes all relevant information into account, thoroughly canvasses a wide range of possible courses of action, carefully weighs what is known about decisional consequences, reexamines the positive and negative consequences of all known options before making the final choice, and makes detailed provisions for implementing or executing the chosen course of action. Unconflicted adherence, typically utilized when making minor decisions, describes the tendency to continue whatever one has been doing without realizing a need to make any choice. As cancer patients from clinical studies have been confronted with the need to make an important decision, unconflicted adherence is unlikely to be found in studies on decision-making that use patient samples. However, it may characterize patients who do not seek timely medical help despite having some symptoms. According to Janis and Mann’s [44] conflict model, situations of low stress elicit unconflicted adherence (if risk of negative consequences of not changing one’s behavior is perceived as low) or unconflicted change. Situations of high stress lead to defensive avoidance and hypervigilance. In situations of moderate stress (e.g. enough time to chose), vigilant decision-making is expected. Four studies are available on age-differences in patients’ treatment decision-making processes. In a qualitative study, Pierce [68] found that early-stage breast cancer patients who followed a vigilant or rational decision style (carefully selecting and weighting information, here called as “deliberators”) were, on average, 10 years younger than the other patients (M = 40 years versus 50 years). Older patients were most likely to follow the suggestions of the physician or select quickly an alternative that was otherwise most salient (unconflicted change, in that study called “deferrers”). No clear age-differences appeared for the tendency to delay the decision (defensive avoidance, or “delayers”). Similarly, Petersen et al. [66] found that older male cancer patients were less likely to show a vigilant decision-making style, and more likely to follow the advice of their physician without much processing of medical information (unconflicted change) or unsystematically shift between options without making a commitment to anyone option; a behavior that bears resemblance to the style of defensive avoidance. However, no significant age-differences emerged in women, which was interpreted as indicating that older women may

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conform less to traditional roles. Decision styles were not related to the severity of illness. In addition, Meyer et al. [60] reported that older breast cancer patients were more likely than younger patients to report needing to make treatment decisions rapidly before the cancer spread. Because vigilant decisions require sufficient collection of information and processing time, this study also indicates that older patients are less likely to show vigilant decision-making. Finally, Pinquart et al. [70] found that independent of cancer stage, older patients (60+ years) had lower levels of vigilant decision-making and higher levels of unconflicted change. No age-differences were found in that study with regard to hypervigilance and defensive avoidance, but the latter behavior was rare, precluding the detection of significant differences. Age-differences in cancer patients’ vigilant decision-making were explained by older adult’s lower speed of processing new information, and lower scores on reasoning, word fluency, and memory tasks. However, agedifferences in unconflicted change remained significant after controlling for interindividual differences in cognition, education, and external health-related locus of control [70]. Thus, older adults’ stronger preference for adopting the advice of other persons (usually of their physician) cannot be explained by age- or cohort differences in health locus of control or cognition, as previously thought [60,94]. Other explanations have to be found, such as their higher motivation for conserving their cognitive resources and avoiding psychological distress, and cohort-specific expectations for paternalistic treatment decisions. The role of age-associated cognitive decline on older patients’ lower levels of vigilant decision-making is also indirectly supported by a recent study on women’s decisions regarding mammography. Age-differences in decisionmaking increase with time pressure and task complexity [92]. Given that more cognitive resources are required for more stressful decisions, age-differences in vigilant decision-making should be weaker for less stressful situations, such as deciding whether to undergo routine mammography. In fact, Budden et al. [12] found no agedifferences in vigilant decision-making for this kind of decision. However, similar to studies on cancer, older women (50+ years) were more likely than younger women to show patterns of unconflicted change.

6. 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

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treatment decisions, Newcomb and Carbone [64] found that older patients (65+ years) were less likely to have been offered adjuvant treatments like chemotherapy and more likely to reject such treatments because of “old age”. In addition, they were also marginally more likely to reject therapies because of side effects. Age-differences in patients’ choices have also been identified in studies on early stage breast cancer, for which two treatment options with similar medical outcomes exist (mastectomy versus lymphectomy plus radiation). Older women are more likely to chose mastectomy and less likely to choose breast conservation surgery than younger patients [64,81,90], perhaps because older women place, on average, less emphasis on sexual attractiveness [27,89]. The observed age-difference may also reflect a cohort effect, because in the 1960s radical treatments were accepted practice when older women first heard about breast cancer treatment [81]. Finally, physicians may be less likely to recommend breast conservation therapy plus radiation for older women because of comorbidities that contraindicate radiation therapy or because physicians make different assumptions regarding the needs of older versus younger women [81]. Decisions of high quality lead to well-informed, rational, and adaptive action [42]. With regard to patients’ treatment decision, criteria for high quality would be selecting the therapy with the best-expected outcomes (e.g. the longest time without cancer-related symptoms and treatment-related side effects), a decision for a proven successful therapy rather than an unproven therapy, and having a good rationale for one’s decision. However, some of these criteria may not work for all patients, for example, if no medical information about the best treatment is available, or if the expected prolongation of life is severely restricted by patients’ age and comorbidity. Age-differences in the quality of treatment decisions of cancer patients have not yet been systematically investigated. Studies on medical decision-making in non-clinical samples indicate that age-differences in the quality of decisionmaking strongly depend on the criteria of decision quality. For example, a study on a non-patient sample faced with fictitious cancer treatment decision-making found that there were no age differences in the selected treatment option [60]. However, older participants were less likely to provide a rationale for their decision. Similarly, a study on estrogen replacement therapy as a treatment in menopause found that older women perceived fewer options to be available to them than younger women, and that the quality of the rationale of older patients was more vague and unsystematic [97]. Stronger impairments of the quality of patient treatment decision-making could be expected in the case of dementia because cognitive impairment may limit patients’ ability to understand the consequences of their decisions. However, there has been no systematic research on cancer treatment decision-making in demented patients, and research regarding dementia patients’ treatment decisions in other areas (e.g. on preferences for life-sustaining treatments) has been in-

conclusive. For example, dementia patients were more likely to prefer life-sustaining medical therapy in one study [33], there was no association of treatment preferences with levels of cognitive impairment in another [20], and higher refusal of such treatments in a third [78]. These results indicate that cognitively impaired older adults may be strongly influenced by the framing of the decision situation, and there is considerable interindividual variability in decision-making capacity. Thus, careful analysis of each patient’s decisionmaking capacity has to be made in order to decide whether the patient will be able to make a meaningful choice [28].

7. 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 wellbeing [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 emotionally and physically distressed [30,51,69,76,77,82]. In addition, feelings of regret and self-blame are possible if a patient chooses a treatment that subsequently proves unsuccessful [62]. Most available studies have focused on the effects of information provision and participation in decision-making on patients’ psychological outcomes, without referring to the fit of desired and actual information receipt and participation in decision-making, and to age-differences in these associations in particular. In these studies, a higher level of information provision has been related to reductions in anxiety [37] and less side effects of chemotherapy [47]. In studies of choice, patients who were given a choice reported better psychological health [1,24,63,73] and physical health [71], although some of these effects appeared to wane after several weeks. However, other studies found no differences in quality of life between patients who were offered a choice and those who were not [50,51], and at least one study found that encouraging active participation in treatment decisionmaking was associated with increased anxiety [38]. Nonsignificant or negative effects of information provision and participation in decision-making are probably more likely to be reported in studies that include a large percentage of patients that prefer to stay passive, so that the receipt of little or no information and assuming a passive role in decision making is consistent with their preferences. In fact, Gattellari et al. [37] showed that mismatches between desired and actual participation are associated with increases in anxiety levels from pre- to immediate post-consultation. In addition, qualitative studies showed that cancer patients who are satisfied with their physician’s efforts to inform them and involve them in decision-making (which indicates a match

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between patients’ preferences and physicians’ behavior) report a higher sense of control [3,58]. However, because in these studies patients were not randomly assigned to a choice versus no choice condition, results have to be interpreted with caution. For example, it cannot be completely ruled out that both groups also differed with regard to other variables (e.g. comorbidity) that might have influenced outcomes. Because older adults prefer, on average, to receive less information from their physician and to take a more passive role in decision-making, they may profit less from information provision and active participation. However, age-differences in the association between cancer patients’ involvement in decision-making and their improvement in quality of life have not yet been tested.

8. 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 for potential confounding variables, or a lack of prospective design that controls for variables at pretest (e.g. outcome studies did often not control for quality of life measures before treatment decisions were made). Thus, more high-quality studies are needed. For example, more effort has to be invested in the development and test of methodologically sound measures. Second, the ways patients participate in treatment decisions may have been influenced by the physician’s framing of the decision problem. Thus, researchers should statistically control for whether physicians present the options to older and younger patients in a similar manner [68]. Similarly, when assessing age-differences in information needs, researchers must control for age-differences in cancer-specific knowledge prior to consultation with the physician. Third, because of the heterogeneity of results on information needs, participation preferences, and psychological outcomes, moderator variables must be identified. For example, there is some evidence that age-differences in the style of participation in treatment decisions may vary by gender [66]. Fourth, more research is needed that identifies variables that account for, or mediate, observed age-differences. For example, age-differences in information needs and participation preferences could be ascribed to age-differences in cognitive function, educational attainment, preexisting knowledge about cancer, locus of control, emotional health, or physical functioning. Fifth, studies are needed on age-differences in the quality of cancer patients’ decision making. For example, it is not known whether older adults’ lower levels of rational decision making would lead to lower quality of their final decision, and

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have implications for morbidity and mortality [60]. Sixth, no studies are available on age-differences in the psychological effects of active participation in treatment decision-making. Research is needed to address that issue. Five practical conclusions are suggested for working with older cancer patients who face treatment decisions. First, the majority of older patients want to receive relevant information regarding their illness and treatment (e.g. 81% [46]), but in a language they understand, free of medical jargon, and in a speed that allows them to process this material. Physicians or nurses may need to spend more time explaining the available treatment options and their consequences. Second, observed age-differences in information needs, preferences for participation in treatment decisions, and ways of making treatment decisions are small to moderate. Given that available studies reveal considerable interindividual variability, health care professionals should not stereotype people by assuming that all older patients would generally assume a passive role in treatment decision-making. It is important to ascertain which role each individual patient wants to play. Given the very low levels of agreement between patients’ preferences and physicians’ estimations of these preferences [77], physicians have to ask their patients directly for their preferences rather than to base their judgment on indirect inferences from the patients’ behavior or from age-stereotypes. They may ask whether the patient wants to be informed about what illness he or she has, about all available treatment options or only about the option the physician would recommend, about the most common/most severe side effects or about all possible side effects, about the expected effect of therapy (e.g. the chance to be cured), how long he or she would have to stay in the hospital, and about additional aspects which may vary by therapy and site of cancer. Third, cohort effects probably contribute to the observed age-differences, as older adults were exposed to a paternalistic model of health care and fatalistic expectations about cancer prognosis, and they have lower educational levels. Age-differences in needs for information and participation in treatment decisions will decline when new generations reach old age. Fourth, in the case of low preferences for active participation, physicians should accept the patients’ wishes, especially if poor cognitive function would preclude patients from participating competently in decision-making. However, by asking patients what is important for them physicians should be able to include the patients’ perspectives in their decisions. For example, the impact of therapeutic options on the quality of life is, on average, more important for older patients than younger ones (e.g. [64]). Fifth, providing conditions that promote active participation in decision-making may influence patients’ preferences. In order for patients to feel comfortable with expressing a treatment preference, physicians must first make older patients feel that their contributions are valued and respected, and that they can participate in the decision-making process. Interventions that encourage and educate older patients to exercise more control over treatment decision-making may

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reduce observed age-differences in participation in treatment processes. For example, no age-differences in preferences for participation in decision-making were found in breast cancer patients who had received written or multimedia material about cancer and therapy before consultation [83]. Such interventions should make the decision easier by using a non-medical language, limiting the provided information per time unit, repeating important information, and helping to structure the decision situation. However, patients’ preferences have to be accepted, if older adults still prefer to take a passive role in decision making after that intervention.

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Biographies 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 lifespan 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.