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© 2002 American Society for Clinical Oncology Consultation Planning to Help Breast Cancer Patients Prepare for Medical Consultations: Effect on Communication and Satisfaction for Patients and PhysiciansByFrom the Harvard Medical School, Boston, MA; Community Breast Health Project and Stanford University, Palo Alto, and University of California, San Francisco, San Francisco, CA. Address reprint requests to Karen R. Sepucha, PhD, Health Decision Research Unit, Massachusetts General Hospital, 50 Staniford St, 9th Floor, Boston, MA 02114; email: ksepucha{at}partners.org
PURPOSE: To measure the prevalence of communication barriers between breast cancer patients and their physicians and to present the results of a study evaluating the impact of two visit preparation techniques on communication and satisfaction for breast cancer patients and their physicians. PATIENTS AND METHODS: We recruited 132 breast cancer patients from two outpatient cancer centers in a sequential, controlled trial. Ninety-four consented and completed the trial. Patients were assigned to one of two visit preparation interventions before their appointment with either a surgeon or a medical oncologist. In the control intervention, called Productive Listening, a researcher listened to and prompted patients to reflect on their experiences communicating with physicians. In the experimental intervention, called Consultation Planning, a researcher elicited questions and concerns, generated a printed agenda for the upcoming consultation, and engaged patients in techniques to improve communication with their physicians. Valid and reliable surveys measured communication barriers, satisfaction with the intervention, and patients and physicians satisfaction with the consultation. RESULTS: Sixty-four percent of the patients reported three or more communication barriers. Patients reported a significant reduction in communication barriers after both the intervention and the control session. Patients reported significantly higher satisfaction after the Consultation Planning sessions. Physicians reported significantly higher satisfaction with those patients who had participated in a Consultation Planning session. CONCLUSION: Visit preparation sessions help patients prepare for medical consultations and reduce barriers to communication. Consultation Planning sessions, in which a researcher solicited the patients agenda, were more satisfying to patients and physicians than the Productive Listening sessions.
PATIENT-PHYSICIAN communication and decision making is challenging. With a serious and complex diagnosis such as breast cancer, these challenges are exacerbated.1 Women with a new diagnosis of breast cancer must come to terms with a new and difficult situation and must make life-altering medical decisions with their physicians. The medical consultations between patients and physicians are an essential part of the decision-making process. Unfortunately, studies show that communication between patients and physicians during consultations, in general, is poor.2-5 Many breast cancer patients are overwhelmed with information and do not know what questions to ask their doctor. Some patients withhold their questions and concerns during consultations for fear of wasting the doctors time. Other breast cancer patients do not know how to raise their concerns and have a discussion with their doctor.6-8 To help breast cancer patients, researchers have created decision support interventions, the majority of which focus on presenting information about the benefits and harms of the choices to patients in more understandable ways. For example, Greenfield et al9,10 helped coach patients by reviewing their medical charts and showing them a decision algorithm. Whelan et al11 and OConnor et al12,13 have created "decision boards," which summarize the key information about surgical treatment for breast cancer. Studies indicate that breast cancer patients can successfully participate in treatment decisions, despite their complexity. Furthermore, their outcomes are better when they do.10,14-16 Researchers agree that patient participation in decision making requires more than simply providing patients information about choices.17,18 To improve the quality of medical decisions, the quality of communication between patients and physicians needs to be improved. To do this, the authors created an intervention to help breast cancer patients define their agenda and communicate their concerns to their physicians. The intervention, called Consultation Planning, is a means of preparing the patient for her medical consultation. We compared Consultation Planning with another type of visit preparation, called Productive Listening, where patients reflected on past experiences with physicians. We examined the effects of these interventions on patients reports of communication barriers and on patients and physicians satisfaction with the consultation.
Setting and Patient Sample For the study, we recruited patients from three oncologists at a tertiary-care breast oncology clinic and from two surgeons and four oncologists at a tertiary-care breast cancer center. We identified patients through the scheduling system. Eligible patients had a diagnosis of breast cancer, could read and/or speak English, and were consulting physicians about treatment. From October 1996 through March 1997, we invited 132 patients to participate, of whom 33 declined. Reasons for declining included ineligibility because of language, concerns about health, and reluctance to commit the time needed. Of the 99 patients who were enrolled, five did not complete the study, for a total of 94 patients. In these five cases, the physician was ready to see the patient before we had finished administering the intervention (or control).
Study Design The diagram in Fig 1 outlines the sequence of the trial and describes the initial, second, and final sets of surveys. To start, all patients reviewed and signed a consent form that had been approved by each institutions committee on human research. Patients filled out the initial set of surveys. Then, one of two researchers administered the control or intervention (as appropriate) in the examination room while the patient was waiting to see the physician. After the session, patients filled out the second set of surveys. After the consultation with their physician, patients filled out the final set of surveys. Physicians also filled out a survey after the consultation.
Interventions Experimental group. One of two trained researchers (J.K.B. and K.R.S.) guided patients through a 20-minute Consultation Planning session. First, patients filled out multiple-choice questionnaires and a two-column survey to help them think about their questions and concerns. Then, the researcher engaged the patient in a conversation about the upcoming consultation and recorded the patients questions and concerns in a flowchart using Prospect Map software (John Amos, Mountain View, CA) and a laptop computer. These questions and concerns were organized to reflect the logic, order, priority, and relevance, as determined by the patient. The researcher printed out the flowchart for the patient to keep and invited the patient to role-play regarding how the consultation plan might be used as an agenda for the upcoming medical visit. Table 1 shows a patients responses to the two-column survey. Figure 2 shows a sample consultation plan that summarizes what was on this patients mind.
Control group. One of two trained researchers (J.K.B. and K.R.S.) guided patients through a 20-minute Productive Listening session. First, patients filled out the same multiple-choice surveys as their counterparts in the intervention group. Then, the researchers verbally prompted patients to reflect on their experiences communicating with physicians by asking productive questions designed to reveal more and more concrete examples of past experiences communicating with physicians.20 An example of a productive question is, "What did Dr X say or do that made you feel so well taken care of?" In contrast to the intervention group, the researcher did not administer the two-column survey, create a consultation plan, or help the patient rehearse their agenda for the upcoming visit.
Measurement of Impact
2. The two-column survey is an open-ended questionnaire with three questions: "What led you to schedule the upcoming appointment?," "What will you say or do during the consultation?," and "What will you be thinking or feeling but not sharing with the physician?" This survey has been used extensively in different situations to facilitate a discussion of difficult issues.20,23 3. The Satisfaction With Interview scale is a five-item Likert scale. Patients could (strongly) agree, disagree, or neither agree nor disagree with statements such as, "This interview helped me prepare for the medical consultation that is to follow" and "If I had to do it over again, Id rather skip the interview and proceed directly to the consultation with the doctor." Possible scores ranged from -10 to 10, with higher scores indicating higher satisfaction. The survey was found to be reliable with a Cronbachs alpha coefficient of 0.71 for 110 respondents.21,22 4. The Patient-Doctor Interaction Scale is a valid and reliable measure of patient satisfaction with the medical interview.24,25 Scores ranged from -38 to 38, with higher scores indicating higher satisfaction. 5. The Physician Satisfaction Scale is a three-item Likert scale. Physicians could (strongly) agree, disagree, or neither agree nor disagree with the following statements: "I was satisfied with the quality of this consultation," "This patient understands the treatment choices," and "This patient understands the issues surrounding her case." Scores ranged from -6 to 6, with higher scores indicating higher satisfaction.
Statistical Analysis
Patient Characteristics At baseline, there were no statistically significant differences in experimental and control groups on the basis of sociodemographic characteristics such as age, race, education, or income (Table 3). However, there did seem to be an imbalance in both stage and education for the two groups. As a result, we used multiple regression analysis that controlled for stage and education to determine whether the results were still valid. The majority of patients in each group, 75% of control and 71% of intervention, were consulting an oncologist about adjuvant therapy for early-stage breast cancer. There was no significant difference in the baseline number of barriers to communication (3.5 and 3.7 for the control and intervention groups, respectively; P > .45).
Prevalence of Communication Barriers At baseline, patients reported several barriers to communication with their physicians. Of the combined sample, 36% reported zero to two barriers, 42% reported three to five barriers, and 22% reported more than five barriers to communication. The most commonly reported barriers were not knowing who to see about their concerns (58%); not choosing their doctor from among several candidate physicians (53%); information overload (49%); and having trouble deciding whether or not to consult another physician (34%). Table 2 contains a summary of the prevalence of each of the barriers in the CBHP scale.
Impact of Visit Preparation Patients were satisfied with both sessions, but reported significantly higher satisfaction with Consultation Planning. The intervention group reported significantly higher satisfaction than the control group (mean of 6.4 for the intervention and 3.9 for the control, for a difference of 2.5 [SD 3.0] on the Satisfaction With Interview scale; P < .001, t = 4.46, df = 90). Figure 3 presents the distribution of scores; almost a quarter (24%) of the intervention group reported perfect scores (10 of 10), whereas none of the control group reported perfect scores (P < .001). Neither stage nor education was a significant predictor for patient satisfaction. Controlling for the imbalance in education and stage, the difference between intervention and control was still significant (difference in means after adjustment of 2.4, R2 = .19, P = .001).
Patients were equally satisfied with the interaction with their physician. Patients in each group indicated similar satisfaction with the medical consultation (mean score of 24 for the control and 24.8 for the intervention, P > .8). Physicians reported significantly higher satisfaction with the consultation when the patients had prepared with Consultation Planning (mean score of 3.1 for the control and 4.4 for the intervention, for a difference of 1.3 [SD 2.5], P < .01, t = 2.86, df = 70). Figure 4 displays the distribution of scores. Stage was a significant predictor for physician satisfaction (P < .001), with the higher the stage, the lower the score. There was no relationship between date on study and physician satisfaction (P > .20). Controlling for the imbalance in education and stage, the difference between the intervention and control was still significant (difference in means after adjustment of 2.0, R2 = .33, P < .001).
Impact of Information Overload There was no difference in the prevalence of information overload between the control group and the intervention group at baseline (P > .8, 2 test). Information overload was found to be a significant predictor of outcomes (mean final score of 3.6 for patients indicating information overload and 2.0 for those indicating no overload at baseline, P < .001, t = 3.56, df = 81).
Breast cancer patients reported that they experienced barriers to communicating with their physician, including not knowing who to see about their concerns (58%), not choosing their doctor (53%), and information overload (49%). Providing more information to patients, half of whom are in "information overload," may not be the best way to help them with their decision. This insight is particularly important in an era where patients are encouraged to become as informed as possible. If we consider that other common problems included not knowing what questions to ask or how to ask them, we find that helping patients to organize and order information and to communicate with their physicians may be of particular value. Communication barriers can be reduced if patients prepare for the interaction with their doctor, through either formal or informal sessions. Something as simple as having someone listen to the patients experiences provided a positive impact. This is not surprising, because thinking out loud and having someone to talk to often helps clarify ones thoughts. Adding more structure with Consultation Planning did not lead to a significantly larger reduction in communication barriers, although patients reported significantly higher satisfaction with the more structured intervention. Part of the lack of difference in reducing communication barriers between the intervention and control may be because of the constraints placed on the intervention in order to make it work within the clinic. The intervention produced a much larger average reduction in communication barriers in a pilot study, more than triple what was found here. However, the pilot sessions lasted close to an hour, and facilitators used computers with large screens that encouraged participation from patients and family members, in a comfortable setting, often a few days before the actual consultation. It is not surprising that condensing the sessions to about 20 minutes, using laptop computers and portable printers, and meeting in a cramped exam room while the patients were waiting to see their doctor did not achieve such results. Another factor contributing to the limited impact of Consultation Planning in this trial may be a ceiling effect. The mean reduction produced by the intervention for patients who initially reported three or fewer barriers was 0.2 (SD 1.03), and for those with four or more it was 2.2 (SD 1.86) (P < .001, t = 4.39, df = 34). There was not a significant difference across those same groups for the control (mean reduction of 0.5 [SD 0.87] and 1.07 [SD 1.74], P = .13, t = 1.61, df = 45). This suggests that there might be a subgroup for which the Consultation Planning provides a moderate to large impact, even within the constraints of the trial. Further studies need to explore targeting the intervention to those who may benefit most, in addition to examining the tradeoff between benefits and costs of providing the service. Despite what seem to be small and similar changes for the control and the intervention groups, physicians did respond better to patients in the intervention group. Physicians felt that patients who had prepared with Consultation Planning had a better understanding of their case and the issues surrounding treatment. This effect was not due to education of physicians over time. This result reinforces the findings of other studies that show that physicians respond well to patients who ask questions and participate in their care.26 Future work should explore which barriers the Consultation Planning reduced in order to provide insight into what is important to physicians, and the relative strengths and weaknesses of the intervention and control. Because the intervention is targeted at changing patients behavior, not physicians behavior, it is not surprising that there was no difference in patients satisfaction with the consultation. The authors believe that the difference in physicians satisfaction is due to a change in patients behavior brought about by the more structured intervention; however, more studies need to be completed to determine how this intervention impacts the dynamics within the medical consultation. Patients need help not only with medical content, such as treatment choices, but also with medical logistics, such as finding and choosing their doctors. The result that more than half of the patients did not feel that they had chosen their doctor is somewhat surprising, given that all the patients were at tertiary referral centers. Traditional decision aids that focus on providing information about the treatment choices and the benefits and harms of the choices could be expanded to include information about the medical specialists that are involved in these decisions and how they may be able to address a patients questions and concerns. With Consultation Planning, a researcher works with patients to solicit the "patients agenda." This intervention is simple to administer and can be replicated in busy clinics. We have had success with nurses, social workers, medical students, and even volunteers filling the role of consultation planner, with limited training. Research is currently underway investigating a Web-based, self-administered version of Consultation Planning. In addition, more research needs to be performed to identify the costs, including the impact on the length of the consultation, and to understand how communication-focused interventions compare with and complement information-focused interventions.
Supported by grants from the Department of Defense (DAMD 17-96-1-6260), the Better Health Foundation, the Breast Cancer Fund, Phi Beta Kappa of Northern California, and the Susan G. Komen Foundation. We thank Michael Fehling, PhD, who was the advisor for J.K.B.s dissertation on Consultation Planning, and John Amos, who developed the Prospect Map software.
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Copyright © 2002 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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