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© 2001 American Society for Clinical Oncology Discussing Adjuvant Cancer TherapyFrom the Medical Psychology Unit and Department of Cancer Medicine, Royal Prince Alfred Hospital, University of Sydney, Camperdown, New South Wales, Australia. Address reprint requests to Natasha Leighl, MD, FRCPC, Medical Psychology Unit, Blackburn Building D06, University of Sydney, Camperdown, NSW, 2006, Australia.
PURPOSE: To document the adequacy of patient information in oncology consultations concerning adjuvant therapy and explore predictors of physician communication patterns, treatment decisions, patient information recall, and satisfaction. PATIENTS AND METHODS: Retrospective analysis of audiotapes and verbatim transcripts of 101 initial adjuvant therapy consultations with medical and radiation oncologists was undertaken. Content analysis, data on communication patterns, treatment decisions, patient anxiety, satisfaction, and information recall were collected. Predictors of physician communication, treatment decisions, recall, and satisfaction with the consultation were identified. RESULTS: The majority of patients were well informed of their prognosis, benefits and risks of therapy, and alternative management options. Only half were asked about preferences for information or decision-making involvement. Predictors of information detail given include patient sex, age, occupation, and education. Radiation and medical oncologists express prognosis and treatment benefit using similar phrases. When offered the chance to delay decision-making, most patients do so (P < .01). Final treatment decisions appear to be influenced by the presentation of choice in treatment options by the oncologist and whether the treatment decision was made during the initial consultation (P < .01). Information recall was not influenced by communication factors. Patients receiving less detailed information had slightly higher satisfaction with the consultation (P = .03). More anxious patients tended to be less satisfied (P = .07). CONCLUSION: The optimal way to discuss adjuvant therapy is undefined. More emphasis can be placed on soliciting patient preferences for information and decision-making involvement and tailoring both to the needs of the individual patient. Providing choice in treatment and delaying decision-making may affect the patient’s treatment decision.
MANY CANCER patients today want detailed information about their cancer diagnosis, prognosis, and treatment options.1,2 Although patient preferences for information and involvement in their care is variable,3-6 there is evidence to suggest that in oncology and other areas of medicine patient health outcomes are better if patients are active participants in medical decision-making or believe they have control over treatment decisions.7-15 This has been seen postoperatively and in patient populations with diabetes and hypertension with outcomes such as improved glycemic and hypertension control, improved postoperative pain control, and shortened hospital stay. Among cancer patients, those who are offered choices in their treatment show better psychologic adjustment, and those who feel they have little control over their disease and treatment have a poorer psychosocial outcome.16-18 In one study, patients who believed they were more responsible for treatment decisions and perceived that they had more choice in treatment selection went on to have better health-related quality of life.7 There is also some evidence to suggest that patients who perceive their physicians are making an effort to facilitate their involvement in decision-making tend to be more involved in that process.19 A study by Kaplan et al demonstrated that physicians with a more participatory decision-making style, including inviting patient assistance in making treatment decisions and giving patients control over their treatment, had higher patient satisfaction and physician loyalty.20 Gafni et al have described a continuum of decision-making with informed decision-making at one end and the physician acting as the perfect agent for the patient at the other.21 In the informed decision-making model, patients make treatment decisions after the physician transfers his or her knowledge of the options, treatment efficacy, and risks to the patient. As the patient’s agent, the physician is able to elicit the patient’s values and then selects the best treatment for the patient based on the patient’s value system. Most clinical decisions appear to be made with the patient and physician meeting somewhere in between those two ends of the decision-making spectrum. Several models of the physician-patient relationship have also been put forth. Emanuel and Emanuel have described four archetypal models of the physician-patient relationship: the paternalistic, informative, interpretive, and deliberative models.22 The paternalistic model is unpopular in modern medicine, with physician emphasis on patients receiving interventions that may not be their preference but best promote their health and well-being. The informative or consumer model portrays the physician as a broker of knowledge. S/he informs the patient of all relevant information, and the patient selects the desired intervention, maximizing patient autonomy. The interpretive model is characterized by the physician helping to elicit the patient’s values and arriving at a treatment decision of the patient’s choice that best realizes those values. Finally, in the deliberative model, the physician and patient review the patient’s values and deliberate about which health-related values the patient could and should pursue. The patient is ultimately empowered to not only follow his/her own preferences but also with the help of the physician to consider any alternative health-related values, their worth, and implications for therapy. Roter et al have developed a system to analyze and classify physician communication patterns, ranging from the "narrowly biomedical" to "psychosocial" and "consumerist" models.23 The former is characterized by closed-ended medical questions and biomedical discussion, and the consumerist approach is characterized by patient question-asking and physician information-giving. Interestingly, the latter yields the highest satisfaction in primary care physicians, but their patients are most satisfied with the psychosocial pattern of communication in which psychosocial concerns dominate the exchange. Similar to decision-making styles, most communication styles in oncology are likely somewhere between the extremes of a biomedical, psychosocial, and consumerist exchange. There have been several studies of what patients wish to know about their cancer, and these findings include their diagnosis, stage of disease, prognosis, treatment options, chance of cure and life expectancy with those options, and side effects of therapy.1,5,24 Patient preferences with respect to framing of prognostic information or the use of numeric terms is more variable and supports tailoring communication about cancer to the needs of the individual patient. Is the oncology community meeting the needs of patients for information and involvement in their cancer care? Just over a decade ago, Siminoff et al at Johns Hopkins University reviewed the adequacy of information discussed during medical oncology consultations regarding adjuvant therapy for breast cancer patients, observing that oncologists tend to have a consistent communication style across all patients, either always giving information or always using a consistent framing pattern, and that over 80% of treatment decisions were arrived at during the initial consultation.25 In this study, we have set out to document the adequacy of information reviewed in initial consultations with radiation and medical oncologists concerning adjuvant therapy and to see what changes, if any, have occurred in communication patterns over the last ten years. In addition, we planned an extensive analysis of treatment discussion, including benefit, risks, and trade-offs of adjuvant therapy, and an exploration of predictors of physician communication patterns, patient decisions, their recall of information, and satisfaction with the consultation.
The current study was part of a larger project investigating the effects on question-asking of a question prompt sheet administered immediately before the first consultation with an oncologist and active endorsement and systematic review of questions by the physician. The aim of the intervention in the larger project was to increase question-asking behavior and investigate the effect of increased question asking on psychological outcome measures.
Participants
Physicians
Procedure
Measures Information and Involvement Preferences. The amount of information participants required was measured using an adapted form of the Cassileth Information Styles questionnaire.1 Participants were also asked to indicate their preferred level of involvement in decision making from a range of five options (from the doctor only making the decision to collaborative decision making to the patient only making the decision).27 Satisfaction. Patient satisfaction with the consultation was assessed using a 25 item Likert scale adapted from Roter28 and Korsch.29 This scale assessed satisfaction with: (i) the amount and quality of information presented, (ii) the communication skills demonstrated by the physician, and (iii) the level of patient participation in the consultation. Recall. Recall was measured using a structured telephone interview. Spontaneous recall was assessed by asking a general question, "What were the most important points which came out of the consultation for you?" Prompted recall was assessed by asking questions regarding specific areas, such as diagnosis, treatment, prognosis, tests, psychosocial issues, and support services available. Patient recall was compared with the actual information provided in the consultation. The percentage of facts recalled accurately in total and the number recalled accurately within each category were recorded. Content Analysis. Retrospective analysis of the audiotapes and verbatim transcripts was undertaken by the primary author, reviewing occurrence of discussion elements including diagnosis, disease extent, prognosis with and without adjuvant treatment, treatment options, goals, and benefits and risks of therapy. Discussion during the consultation was further coded for framing of information, common phrases and concepts used, the use of numeric and/or nonnumeric descriptive terms, and whether the oncologist or the patient initiated discussion of the element in question. A prognosis described with words such as "death" or "cancer recurrence" is considered negatively framed, a description with words such as "survival" or "cure" is positively framed, and mixed framing refers to the use of both positive and negative framing. Numeric terms included percentages and/or fractions, and descriptive terms included words such as "a lot," "a high chance," or "a good outlook." Detail of information discussed was scored using a 6-point scale. One point was given for each area discussed, including discussion of the goal of therapy, description of prognosis without and with treatment in numeric terms, benefit of therapy, other treatment options, and review of side effects. These points were summed to provide a total score.
One rater reviewed all 101 consultations with a second rater reviewing 10% of the consultations. Inter-rater agreement for the coding elements ranged from 94% to 100% agreement (
Statistics
Predictors of decision timing (during or after the consultation) and actual decisions (according to or other than the doctor’s recommendation) made were similarly analyzed initially by Relationships between patient-satisfaction and doctor-communication variables (including level of detail provided, number of options discussed, presentation of a choice in options, the chance to delay decision-making, the physician recommendation, and patient anxiety recoded into a median split of high and low), as well as decision-timing, were explored using the Mann Whitney U test, as satisfaction data were positively skewed. Correlation between anxiety change scores pre and postconsultation and satisfaction was calculated using Spearman’s rank correlation coefficient. Percent recall was normally distributed; multiple linear regression was used in analysis of recall, including as predictors patient characteristics (age, sex, education, whether accompanied, and anxiety), physician characteristics (consultant seen and specialty), and communication factors (detail of information presented, whether numbers or words were used, and framing). As information preferences were uniformly quite high without variability, these were not used as a variable in the above analyses.
A total of 101 cancer patients participated in the study with only one patient refusing participation. Demographic and disease characteristics of the sample are listed in Table 1.
Content Analysis Diagnosis. The use of the word "cancer" as the diagnosis was explicit in almost all consultations, and the stage of disease was reviewed in the majority ( Table 2).
Prognosis. Oncologists told most patients the natural history of their disease without further therapy as well as their prognosis with the addition of treatment. Most oncologists used mixed framing and both nonnumeric and numeric (percentage) terminology ( Table 3), frequently referring to the patient’s lifetime risk of disease recurrence and the patient’s chance of cure ( Table 4).
Treatment options. On average, four treatment options were reviewed during the consultation with all but one patient discussing two or more options. Over half of patients discussed chemotherapy (76%), radiotherapy (71%), and no further treatment (70%) with their oncologists, and physicians introduced clinical trial participation as an option in one quarter of consultations. Oncologists discussed alternative therapies in 13% of consultations, usually at the request of the patient or accompanying family members. Medical oncologists discussed a median number of three treatment options per consultation (range, 1 to 7, interquartile range (IQR) = 2.8-4.0), and radiation oncologists discussed a median of 2 options per consultation (range, 1 to 5, IQR = 2.0 - 3.0), a statistically significant difference (  26 = 23.8, P = .001). The goals of therapy were clearly reviewed with nearly all patients, most commonly as the improvement of relapse-free survival (60%) and improving the chance of cure (41%–see Table 5). Survival advantage was expressed as the goal of therapy to 12% of patients. Percentage risk reduction in long term survival was described clearly to only one patient. Side effects of therapy were discussed with 89% of patients, and in two thirds of consultations, the oncologist reviewed the concept of treatment as a tradeoff between benefits and risks. Interestingly, even before recommending a specific treatment, oncologists were more likely to review side effects only of the therapy to be recommended or to review more side effects for that recommendation than for other options discussed (66% and 15%, respectively).
Overall level of detail provided. Overall, doctors provided a high level of detail. Forty-nine percent of patients received all items of information (range of scores, 2 to 6; median = 5; IQR = 4-6). Communication preferences and understanding. Only half of patients were asked whether they understood the information discussed, and most were provided with a clear opportunity for questions. Oncologists explained medical terminology to 60% of patients, usually without a request or prompting from the patient. Finally one quarter of patients were given additional information aids during the consultation (published booklets to 12%, trial consent forms to 9%, and other aids to 3%). In the preconsultation questionnaire, the majority of patients indicated that they wanted all available information (over three quarters) with an extremely positively skewed distribution (median = 5 out of total score 5, IQR, 5 to 5). Treatment decisions. Oncologists made clear treatment recommendations to 89% of patients (Table 2). More than half were told that they had choices in selecting a treatment option, and just over a third were told that they could reach the final adjuvant therapy decision some time after the initial visit. Less than one quarter of patients disclosed their information preferences, usually self-initiated. Only half of patients discussed their values regarding quality and quantity of life with their oncologists, and the patients were more likely to volunteer this information than the oncologists were to request it. Seventy-one percent of patients arrived at a treatment decision with their physicians during the first consultation, the remainder arriving at that decision within 1 to 4 weeks after the initial visit. Of the actual adjuvant therapy decisions made, 84% were available for analysis. The remainder could not be determined from retrospective chart review. Eighty-eight percent of patients in this group accepted the physician recommendation, 11% chose another option discussed during the first consultation, and one patient raised the option of clinical trial participation at her second visit and subsequently enrolled.
Predictors of Communication Patterns
Framing. Univariate analyses of three framing variables were explored (framing of prognosis with and without treatment and benefits of treatment expressed as absolute risk or relative risk reduction). Radiation oncologists consistently gave more patients messages in a positive frame than medical oncologists (Table 6). Despite similar disease stage and prognosis, males received more positively framed messages regarding prognosis with treatment and treatment benefits ( 22 =1 8.2, P = .0001; 22 = 12.2, P = .002, respectively).
Numerical Versus descriptive language.
When describing both prognosis with and without treatment, oncologists used descriptive terms more frequently with older than younger patients ( Individual physicians usually had a consistent style of communication that they used for most of their patients, including framing prognostic information in the same manner and using only either nonnumeric or numeric terms with 70% of their patients. Oncologists also used the same concepts to illustrate prognosis (such as the chance of cure with or without treatment) for 86% of their individual patients and expressed treatment benefit using the same concept for 67% (ranges, 63% to 100% and 29% to 100%). Seven of nine physicians had characteristics of a paternalistic communication style, and one was informative and another interpretive using Emanuel and Emanuel’s classification.22 Small numbers disallowed statistical analysis of outcomes using doctor communication styles as a predictive factor.
Predictors of Decision Timing
Predictors of Whether the Treatment Decision Was Concordant With the Physician Recommendation Men were more likely to follow their physician’s recommended treatment choice (Table 6). Compared with 53% of those who were offered a choice, 95% of patients who were not explicitly offered a choice of treatments followed their physician’s recommendation ( Fig 2). Again, almost all patients who made their treatment decision during the initial consultation followed their physician’s recommendation compared to just 21% of those who made their decision outside of the consultation. Patients provided with more information were also less likely to follow the physician’s recommendation. Framing of prognostic information did not impact on patients pursuing the physician’s recommendation. In a multivariate logistic regression, excluding the offer of choice (highly correlated with deferred decision making), only deferral of decision making remained in the model as a significant predictor of whether the patient would follow the physician’s treatment recommendation, (Table 6).
Satisfaction With the Consultation Total satisfaction with the consultation reported by patients was positively skewed with a median score of 108, ranging from 83 to a full score of 125, (IQR, 102 to 115). There was no association between patient satisfaction with the consultation and the presentation of a treatment recommendation, the clear presentation of choice in treatment options, or with timing of the treatment decision. Also, there was no difference in satisfaction for patients reviewing fewer (one to three) or more (four to seven) treatment options. Interestingly, patients given less detailed information (detail of information score 0 to 3 vs. 4 to 6) had marginally higher satisfaction scores than the group given more detailed information (total satisfaction score, median 112 vs. 107, IQR, 105 to 120 vs. 102 to 112; z = -2.09, P = .036). Finally, patients who were less anxious immediately after the consultation tended to be more satisfied (anxiety immediately after consultation, median split high versus low, z = -1.78, P = .075). Patients who had a clear decrease in their anxiety after consultation as compared with before consultation also appeared to be more satisfied, (Spearman’s p = -0.353, P = .001).
Recall of Information
Patient Anxiety
In this study, the majority of patients were well informed of their prognosis, goals of therapy, treatment benefits and risks, and other therapeutic options. In the prospective study carried out by Siminoff et al a decade ago, content analysis of consultations for 100 breast cancer patients seeking an adjuvant therapy opinion revealed similar results with 85% of patients discussing more than one treatment option and 89% discussing the benefit of recommended therapy.25 However, fewer patients received numeric estimates of this benefit; approximately half the number receiving numeric estimates in the current study, (31% compared with 68%). In studies of information recall, patients often overestimate the risk of death and disease recurrence without further therapy.25 In addition, they are inclined to overestimate the benefit of therapy,2,25 as do oncologists,31 which clearly affects recommendations and decisions to pursue treatment. Although there is some evidence that patients given numeric estimates of prognosis have more accurate recall,25 this was not confirmed in the present analysis. A similar study at our institution has been conducted analyzing cancer consultations of patients with metastatic disease.32 In contrast to our study of patients seeking adjuvant therapy, a significantly lower number of patients heard about their prognosis (43% metastatic, 89% adjuvant), but the number discussing life expectancy with and without therapy was similar (14% metastatic, 20% adjuvant). This difference may be related to either patient reluctance to ask about prognosis or the physician’s reluctance to disclose information when the prognosis is poor. But even in the adjuvant setting, physicians tended to avoid discussion of possibly shortened survival from cancer, despite wide acceptance of mortality reduction as one of the most important justifications for the administration of adjuvant therapy. To put this into the perspective of a patient’s preference for such information, a survey of early stage breast cancer patients found that more than half wish to hear about their life expectancy with and without treatment during the cancer consultation.33 In the survey of informational preferences in breast cancer patients by Lobb et al,1 almost all patients surveyed wanted their oncologist to ask whether they wished to hear about their prognosis and to check their understanding of the information discussed. Oncologists in this study infrequently asked about the information and involvement preferences of individual patients, and physicians in previous studies have been shown to be inaccurate in their estimation of such preferences.34,35 Also, physicians explicitly checked their patients’ understanding in only half of consultations. Although physicians may presume that patients will readily inquire if information is not understood or will be easily identified through implicit cues in the consultation, as many as a third of patients misunderstood information, unbeknownst to their oncologists.34 Similar to oncologists a decade ago, oncologists in this study tended to have "invariate" information-giving styles. Specifically, those physicians who tend to give more information do so consistently,25 and individual physicians tend to frame prognostic information in a similar manner.36 In our study, this extended to the use of similar concepts in descriptions of prognosis, such as cure or relapse-free survival. Studies of communication preferences in cancer patients suggest that age, sex, and education are all predictors of patient information and involvement preferences.4,24,37 The literature suggests predictors of actual communication include age, sex, education, and prognosis,38,39 as seen in this analysis with the addition of occupation as a predictor of communication between doctor and patient. Thus, oncologists, although not directly seeking patients’ information and involvement preferences, appear to be trying to assess patient characteristics that might influence their desire for information and to tailor their delivery accordingly. The differences between the communication patterns of radiation and medical oncologists are of interest but uncertain consequence with radiation oncologists giving patients more positive messages and more information in the form of percentages. Patients were more likely to arrive at a decision with their radiation oncologist during the initial consultation than in medical oncology consultations. Several reasons may underlie this, including more treatment options being reviewed in medical oncology consultations, and given that over half of patients had a diagnosis of breast cancer, some may have already expected to receive adjuvant radiation treatment as part of a predetermined path of breast conservation therapy. A decade ago, 82% of patients arrived at a treatment decision during the initial consultation.25 The authors went on to suggest that adjuvant therapy decisions should be reached after more than one meeting, postulating that patient and physician fatigue may limit communication.25 The situation has not changed greatly in the late 1990s, as 71% of treatment decisions in our study were reached within the initial consultation. Since an explicit statement that the patient has a choice to make and an explicit offer to delay decision-making are both strongly associated with decisional delay and a treatment choice different from that recommended, we believe these strategies should be considered in oncology consultations where possible. However, higher patient anxiety was also correlated with delayed decision-making, and it is not clear from this study whether this is the end result of not reaching a final treatment decision and plan by the end of the first meeting. In Siminoff et al’s study, most patients followed the physician’s recommendation, and factors predicting acceptance of the recommendation included perceived "strength" of the treatment recommendation, amount and specificity of information, as well as patient attributes such as willingness to take risks.40 Patients not accepting the physician recommendation in their study tended to have higher levels of education, were given numeric details of benefit, or felt side effects of the recommended treatment were highly probable and would be severe. In our study, the explicit presentation of choice in selecting treatment is likely related to "strength" of the physician recommendation and is associated in the same way with patients tending to reject the physician recommendation. Being presented with the opportunity to delay decision-making is closely associated with the explicit presentation of choice in treatment options and is also associated with patients tending to reject the physician recommendation. Similarly, patients who received more detailed information were less likely to follow the doctor’s recommendation, as were women, which may be a function of receiving more detailed information than men. In contrast to the earlier study, side effect disclosure does not appear to influence acceptance or rejection of the physician recommendation in the current cohort. Both our study and the previous one did not find a correlation between framing of prognostic information and acceptance of the treatment recommendation or the type of treatment chosen.36 This finding is in contrast to studies using clinical vignettes, which have suggested that patients are more likely to seek higher risk therapies if their prognosis is described with negative framing.41,42 Patient satisfaction with the consultation was associated with lower patient anxiety after consultation, and those who experienced a reduction in their anxiety levels by the end of the consultation tended to be more satisfied with the consultation. It is interesting that those with higher anxiety at the end of the consultation were more likely not to have reached a decision, and one may postulate that those who had not reached a decision may well have had higher anxiety and decisional conflict. But the data are not available from this study to examine whether patient anxiety was augmented in part because no decision had been reached or if additional factors were more important in causing and/or maintaining higher levels of anxiety. This finding does, however, raise additional questions about whether moving to a two-visit decision-making process for all patients considering adjuvant therapy is desirable and well worth further study. Our study is clearly limited by its retrospective design and by the small number of patients and oncologists at only two institutions. While hypothesis-generating, these results cannot necessarily be described as characteristic of the general oncology patient and practitioner population. In addition, the measure of patient satisfaction is specific for the consultation and may not be reflective of satisfaction with the treatment decision made. Information disclosure in most consultations appears adequate to help patients make informed treatment decisions. But asking patients about their information and decision-making involvement preferences and tailoring communication to meet the needs of the individual is not universal. Successful achievement of patient communication and involvement preferences may translate into better disease outcomes and even health-related quality of life.7-15,24 Despite an association with rejecting the physician recommendation, providing patients with clear choices in treatment options is correlated with better psychological adjustment of patients.16-18 The policy of deferring treatment decisions to a second consultation is gaining acceptance as a way to optimize decision-making,25,43 but our study suggests that this may result in fewer patients accepting the physician recommendation. Is this a reflection of the differences in value systems between the general population and healthcare workers,44-46 or does detailed information disclosure have unintended and undesirable effects during cancer consultations? Is there a balance remaining to be struck between adequate disclosure and too much information? Our study strongly suggests that an explicit statement of patient choice in treatment or of the opportunity to reach a treatment decision at a subsequent visit affects patient decision-making behavior. This need for explicit facilitation may represent an overt signal that active behavior is acceptable in the patient-doctor relationship, or additional encouragement for those patients who are unaccustomed to active participation in their care. The optimal way to discuss adjuvant therapy remains undefined, but meeting the needs of the individual patient will likely be more valuable than a standardized approach. Audiotaping of cancer consultations and other ways of recording interaction between the patient and physician will facilitate study in this area in addition to the previously demonstrated benefits of better patient understanding and improved satisfaction.47-51 Further investigation is required to delineate those elements of communication that enhance patient outcomes of anxiety, satisfaction with decision-making, and quality of life. Then we can better design interventions to optimize both physician communication and patient information strategies with the goal of improving those outcomes as well as prolonging survival.
Supported by the Department of Medical Oncology, University of Toronto.
Presented at the 36th Annual Meeting of the American Society of Clinical Oncology, New Orleans, LA, May, 2000.
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Tattersall MHN, Butow PN, Griffin A-M, et al: The take-home message after a cancer consultation: A randomised trial of consultation audiotapes and individualised letters to patients. J Clin Oncol 12: 1305-1311, 1994 51. McHugh P, Lewis S, Ford S, et al: The efficacy of audiotapes in promoting psychological wellbeing in cancer patients: A randomised controlled trial. Br J Cancer 71: 388-392, 1995[Medline] Submitted May 2, 2000; accepted December 7, 2000. This article has been cited by other articles:
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ABSTRACT
INTRODUCTION
0.87 to 1) using the Landis and Koch classification system.
