Decision Support for Patients With Breast Cancer

Katharine Kostbade Hughes, PhD, RN, Arthur S. Elstein, PhD, and Gretchen Chapman, PhD

Katharine Kostbade Hughes is an assistant projessor, Department of Administrative Studies in Nursing, College of Nursing; Arthur S. Elstein is a projessor Department of Medical Education, Collelle of Medicine; and Gretchen Chapman is an assistant professor, Department of Medical Education, College of Medicine, University of Illinois at Chicago.

Reprinted by permission of the publisher
Copyright, 1994 Meniscus Health Care Communications, a division of Meniscus Limited.

Innovations in Oncology Nursing, Vol 10, No. 1, pp 18-21

Theoretical Background

Despite the ethical, therapeutic, and economic implications of making optimal treatment choices, relatively little is known about decision making from the patient's perspective. The use of interventions to support patients in the clinical decision-making process has also been limited. [1,2] One such intervention, decision support, is a predecisional technique designed to assist patients in their examination of treatment alternatives, risks, and benefits, as specified by their physicians.

This article reports the findings of an investigation that assessed decision support for breast cancer patients who are candidates for either lumpectomy with radiation or modified radical mastectomy, with or without immediate reconstruction. This population was chosen because the survival and recurrence rates for the two approaches are often similar; therefore, treatment choices for this group depend largely on individual preferences. [3,4]

Decision support is based on the conflict theory of decision making. [5,6] It aims to help the individual become more "vigilant" and thereby manage decisional conflict, defined as the "simultaneous opposing tendencies within the individual to accept and at the same time reject a given course of action."[5] Psychologists and others [6] have long argued that vigilant decision makers are likely to make optimal decisions and experience less postdecisional regret and conflict because they have surveyed and evaluated all alternatives, risks, and benefits; examined the values of the various alternatives; searched for new information; and reexamined the consequences of all alternatives. Because of their active involvement in the decision-making process, it is also believed that vigilant decision makers are better able to retain and recall salient information about the various treatment alternatives.

Many decision scientists believe that vigilance can be fostered through predecisional interventions that help the decision maker make the best-possible choice within the context of individual values and objectives. [5] Such interventions have been used in several different clinical populations. [7,8] They are thought to minimize feelings of uncertainty and regret while facilitating the assimilation and recall of important information. Because breast cancer patients face difficult decisions that must be made within a relatively short period of time, it was hypothesized that predecisional interventions might help these patients to understand better the risks, benefits, and consequences of their particular treatment options.

Methods

Patients were selected from a multidisciplinary referral center for the treatment of breast cancer. Those selected were patients with stage I or II breast cancer who faced the choice of undergoing lumpectomy with radiation or modified radical mastectomy. Subjects were also required to be at least 18 years of age and able to speak English. Of the 101 patients who were asked, 71 (60%) agreed to participate. Participants and nonparticipants were similar with respect to age and race. Anxiety and time constraints were the primary reasons given by nonparticipants for not agreeing to take part in the study. Approximately half of this convenience sample (n= 37) received decision support. Decision support took place before an actual treatment decision had been made, but after the team of physicians-the surgeon, oncologist, and radiation therapist--had presented the diagnosis, prognosis, treatment alternatives, and potential treatment risks (side effects) and benefits. It is important to note that the patients in the study are not representative of all breast cancer patients. Despite efforts to obtain a representative sample, patients in this study were very well educated, predominately white, and relatively affluent. The study must be interpreted in this light. See Table 1 for demographic data.

The study was approved by the full committee of the university institutional review board and the human investigations committee of the hospital. Prior to clinic evaluation, all potential subjects were given an information sheet describing the study. Once written consent had been obtained by the principal investigator or the data collector (a doctoral candidate in nursing), subjects were randomly assigned to the decision support (intervention) and control groups. Subjects were asked to complete an 18-item background inventory that assessed socioeconomic status and educational background as well as the amount and type of information obtained by the patient prior to her clinic visit. Subjects then completed questionnaires designed to measure uncertainty [9], quality of life [10], and preferences for information and involvement in decision making [11].

Each decision support session, which took approximately 30 minutes, began when the trained data collector asked subjects to enumerate and describe the various treatment alternatives presented by their physicians, along with the potential clinical outcomes, both positive (benefits) and negative (side effects or risks). Then subjects were asked to recall the likelihood that they might experience these outcomes. Next they were asked to place a "value" on the various implications of the different treatment alternatives. No information was introduced to subjects by the data collector during these sessions. The session ended when subjects were asked to reexamine the treatment alternatives and encouraged to consult their physicians for answers to questions that might have been raised.

TABLE 1 - Demographic Data of Control Group vs Decision Support Group


                                     Decision
                     Control          Support          Total
Education
  High School        8 (24%)          12 (32%)         20 (28%)
  Some College      11 (31%)           5 (14%)         16 (23%)
  College Graduate   8 (24%)          10 (27%)         18 (25%)
  Postgraduate       7 (21%)          10 (27%)         17 (24%)

Race
  White             29 (85%)         29 (78%)         58 (82%)
  Black              5 (15%)          8 (22%)         13 (18%)

Income*
  Up to $39,999     10 (29%)         10 (27%)         20 (28%)
  $40 - $49,999      6 (18%)         11 (30%)         17 (24%)
  $50 - $74,999     16 (47%)         7  (19%)         23 (32%)
  $75,000 and up      2 (6%)         9  (24%)         11 (16%)

Mean Age (SD)     50.71 (11.70)    46.81 (10.16)    48.68 (1.02)
Age Range          32-81 years      22-73 years      22-81 years

* P less than 0.025

Approximately 8 weeks after surgery, subjects were contacted by telephone by the data collector. They were asked to recall the information that had been conveyed to them by their physicians prior to surgery. This was done via a 21-item questionnaire similar to the one previously used to measure subjects' understanding of information presented during the consent process. Postdecisional regret was also assessed at this time. Owing to patients' reluctance to admit regret, postdecisional regret was operationally defined as responses on a 7-point Likert-type scale to the question, "With respect to your choice of treatment for breast cancer, how satisfied were you with your decision?" They were then sent additional questionnaires that measured uncertainty and quality of life as well as the reaction to the diagnosis of cancer.[12]

Effects of Decision Support

The study found that decision support did not influence, one way or another, subjects' abilities to recall information about the nature of the treatment alternatives, or their respective risks and benefits. In fact, both decision support and control group subjects had exceedingly poor recall of previously conveyed information. For example, 8 weeks after surgery, approximately 73% of decision support subjects and 62% of control group subjects were unable to enumerate important characteristics of the lumpectomy option that differentiate it from other treatment alternatives, even though such information had been presented to them by members of the clinic team. Recall for information pertaining to the modified radical mastectomy option was even poorer, with 95% of decision support subjects and 91% of control subjects unable to enumerate important characteristics pertaining to that alternative.

The study also found that decision support was unrelated to postdecisional regret: subjects who received decision support were as likely to be satisfied with their treatment decisions as those who received no such support. It is important to note that 87% of all subjects were "very satisfied" or "moderately satisfied" with their decision. No subjects were "very dissatisfied" and only one subject was "moderately dissatisfied." Furthermore, decision support did not influence patients' actual decisions as to which treatment to undergo. In other words, when actual treatment decisions for the two groups were compared (using the chi-square method), decision support patients were as likely as control group patients to choose between the treatment options (lumpectomy with radiation therapy or modified radical mastectomy, with or without immediate reconstruction).

Finally, the study found that decision support did not influence patients' reported quality of life or reaction to the diagnosis of cancer. Patients in both groups reported similar feelings about the quality of their lives after cancer and similar ways of emotionally responding to and coping with the cancer diagnosis. However, decision support and control subjects did differ in the extent to which they perceived their situations to be uncertain. Consistent with expectations, decision support patients experienced a "net decrease" in uncertainty over the 8 weeks following their diagnosis. This net decrease was determined by repeated measures of analysis of covariance, controlling for preintervention differences between subjects. The relationship between decision support and mean uncertainty, quality of life, and reaction to the diagnosis of cancer can be found in Table 2.


                  Table 2
Differences Between Decision Support and Control Groups

Variable                                              Uncertainty
--------                                              ----
Uncertainty                                           P less than 0.02*

Quality of Life
  Health subscale                                     not significant
  Economic subscale                                   not significant
  Psychological/spiritual subscale                    not significant
  Family subscale                                     not significant

Reaction to Cancer Diagnosis
  Confronting subscale                                not significant
  Distress subscale                                   not significant

* Uncertainty decreased in decision support patients.

Implications for Research

Despite the seemingly small effect of decision support, this study highlights the need to develop new methods to help breast cancer patients assimilate and use information under highly emotional circumstances, and thereby facilitate the decision-making process. Recently, a pilot study was undertaken to examine the relative effectiveness of videotape and printed information about breast cancer and its treatment as well as the effect of format on preferences.

A convenience sample of 82 female undergraduate students was selected from a large midwestern university. These students were presented with information about breast cancer and its treatment in one of two formats. One half viewed an edited videotape version of the Breast Cancer Treatment Shared Decision Making Program produced by the Foundation for Informed Medical Decision Making. The other half read a booklet that contained the information presented in the videotape.

The videotape presented information about breast cancer, lumpectomy with radiation, modified radical mastectomy, and breast reconstruction and included interviews with actual patients who discussed their individual decisions and rationales for those decisions. Three photographs of surgical results were also added to show "typical" results following the three procedures. The booklet, which was developed from the videotape script, included photographs that had been selected to match closely those shown in the videotape but it did not include the patient interviews.

Preliminary results indicate that knowledge about breast cancer and its treatment increased for both the videotape and booMet groups. Preferences for lumpectomy with radiation increased for the students who watched the videotape but remained the same for students who read the booklet. In other words, knowledge was increased regardless of format, although format appeared to influence preferences for one treatment alternative over another. This influence of media format may be the result of the patient interviews presented in the videotape but not the booklet.

Additional inquiry is needed to understand better the relationships among knowledge about breast cancer and its treatment, preferences for specific treatments, and the format of educational material. Future studies are planned that will include larger groups of women who are more representative of the general breast cancer population.

ACKNOWLEDGMENT-this research was supported, in part, by a grant from The University of Illinois at Chicago Internal Research Support Program. The authors would like to thank the physicians and staff of the Comprehensive Breast Center, Rush-Presbyterian-St Luke's Medical Center, Chicago, Ill, for encouraging and supporting this research.

Details about this research and the various instruments used may be obtained from Dr Hughes.

References

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