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Communicating Prognostic Information in Oncology
Study Overview
Objective. To assess the prevalence and determinants of patient–oncologist discordance in opinion of prognosis, and evaluate how often patients are aware of this discordance.
Design. Cross-sectional study.
Setting and participants. The study included 236 adult patients with advanced cancer and their 38 oncologists at academic and community oncology practices in Rochester, New York, and Sacramento, California. Inpatients and those already enrolled in hospice were excluded.
Main outcome measures. Patients and their oncologists independently reported their ratings of 2-year survival probability on a postindex visit multiple-choice questionnaire (response options included 100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). Prognostic discordance was defined as a more than 1 category difference between the patient and physician prognostic ratings. All patients were asked to report how they believed their oncologist would rate their 2-year survival probability. Those who correctly perceived their oncologist’s rating of their prognosis (within 1 category) were defined as knowing their oncologist’s opinion, and the rest were defined as not knowing their oncologist’s opinion. This distinction was used to categorize patients whose self-rating of their prognosis was discordant from their oncologist’s rating as either knowingly discordant or unknowingly discordant. Patient characteristics including age, sex, race/ethnicity, education, income, aggressiveness of cancer, self-efficacy with health care communication, recall of prognostic discussion with the oncologist, and end-of-life treatment preferences were evaluated as potential determinants of prognostic discordance.
Main results. 68% of patients rated their 2-year survival probability discordantly from their oncologists. Among these, 96% rated their prognosis more optimistically than their oncologists, and 89% were unaware that their opinions differed from that of their oncologists. Prognostic discordance was more common among nonwhite compared to white patients (95% versus 65%, P = 0.03). The prevalence of prognostic discordance did not significantly differ based on the other patient characteristics studied. Among patients whose prognostic ratings were discordant from their oncologist’s, 99% reported that they wanted to be involved in treatment decision making, and 70% were interested in involving palliative care when the end of life became near.
Conclusion. Patient–oncologist discordance about prognosis was common, particularly among nonwhite patients. In cases of prognostic discordance, patients rarely knew that their opinion differed from that of their oncologist, suggesting a lack of successful communication of prognostic information.
Commentary
Prior studies have noted that patients with advanced cancer perceive prognosis more optimistically than their physicians [1–3]. In a large national prospective observational study, the majority of patients receiving chemotherapy for metastatic (stage IV) lung or colorectal cancer inaccurately believed that chemotherapy was likely to be curative, potentially compromising their ability to make informed treatment decisions [4]. In the present study by Gramling et al, the authors confirm the observation that patients are more optimistic about prognosis than their oncologists, and furthermore demonstrate that most patients are unaware of the discrepancy, suggesting a failure of communication. As in prior studies, racial disparity in prognostic understanding was observed, with nonwhite patients being more likely to have overly optimistic views of their prognosis [4,5].
While the perceived 2-year survival probability is a somewhat arbitrary measure of prognostic opinion, it provides a useful representation of how one views the expected trajectory of disease. A high perceived likelihood of 2-year survival implies a view that long-term disease control can be achieved, whereas a low perceived likelihood of 2-year survival implies acknowledgement of terminal illness. This study effectively contrasts patient and physician opinions of 2-year survival probability, but it does not discriminate among clinically relevant differences in opinions within the 0–2 year prognostic range. For example, a patient whose oncologist believes his prognosis is < 6 months may be an appropriate candidate for hospice, but the patient may be unprepared to make the transition to hospice if he believes his prognosis is closer to a year or more. While the patient and oncologist may agree that 2-year survival is unlikely, they may have differing beliefs about the appropriateness of certain interventions based on their discrepant short-term prognostic views. Additional studies looking at perceived probabilities of short-term survival may be helpful in assessing patients’ readiness to transition to symptom-focused care when medically appropriate.
The authors designate 7 categories of 2-year survival probability (100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). The differences in percentage between prognostic categories are not evenly distributed, and therefore definition of discordance is non-uniform. The smaller percentage difference at the highest and lowest ends of the scale may result in overestimation of discordance at these extremes. For example, a patient rating her 2-year survival probability at 100% would be defined as having a discordant viewpoint from an oncologist rating her 2-year survival at 75% (as would be realistic for a diagnosis such as metastatic colon cancer). Given the imprecise nature of prognostication, the views of the patient and oncologist in this example are arguably similar, and perhaps should not be categorized as discordant.
As noted, patients already enrolled in hospice were excluded from the study, thus omitting a key group of patients whose prognostic views are more likely to be concordant with their physicians’ views. This group may be better captured in a prospective study of prognostic discordance among newly diagnosed advanced cancer patients after initial oncology consultation, allowing for inclusion of those who make an early transition to hospice.
Applications for Clinical Practice
Although clinicians tend to overestimate prognosis, their predictions correlate with outcomes in advanced cancer [6], and may therefore provide a useful framework for patients to understand the likely course of their disease. However, physicians often avoid explicit discussion of prognosis by shrouding prognostic information in discussions of radiographic findings, and quickly transitioning to discussion of treatment options [7]. Patients and families rarely inquire about prognosis, further limiting disclosure of prognostic information [7,8]. Even when prognostic information is explicitly stated, patients may misinterpret the information [4], potentially adversely affecting their ability to participate in shared decision making.
Some useful approaches for successfully communicating prognostic information may include asking patients what information they wish to hear before it is disclosed, providing prognostic data for patients with similar disease states while acknowledging individual variability, clearly defining the intent of proposed therapy (ie, curative versus noncurative), and asking the patient to restate information in order to assess understanding. Early involvement of palliative care specialists may help reinforce understanding about prognosis and goals of therapy, facilitate advance care planning, and reduce aggressive interventions at the end of life [2]. Ongoing research is directed at identifying effective interventions to improve communication between patients with advanced cancer and their oncologists [9].
—Irene M. Hutchins, MD
Scripps Cancer Center, La Jolla, CA
1. Weeks JC, Cook EF, O’Day SJ, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279:1709–14.
2. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011;29:2319–26.
3. Pronzato P, Bertelli G, Losardo P, Landucci M. What do advanced cancer patients know of their disease? A report from Italy. Support Care Cancer 1994;2:242–4.
4. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012;367:1616–25.
5. Ford D, Zapka J, Gebregziabher M, et al. Factors associated with illness perception among critically ill patients and surrogates. Chest 2010;138:59–67.
6. Glare P, Virik K, Jones M, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 2003;327:195–8.
7. Singh S, Cortez D, Maynard D, et al. Characterizing the nature of scan results discussions: insights into why patients misunderstand their prognosis. J Oncol Pract 2017:JOP2016014621.
8. Leydon GM, Boulton M, Moynihan C, et al. Cancer patients’ information needs and information seeking behaviour: in depth interview study. BMJ 2000;320:909–13.
9. Hoerger M, Epstein RM, Winters PC, et al. Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 2013;13:188.
Study Overview
Objective. To assess the prevalence and determinants of patient–oncologist discordance in opinion of prognosis, and evaluate how often patients are aware of this discordance.
Design. Cross-sectional study.
Setting and participants. The study included 236 adult patients with advanced cancer and their 38 oncologists at academic and community oncology practices in Rochester, New York, and Sacramento, California. Inpatients and those already enrolled in hospice were excluded.
Main outcome measures. Patients and their oncologists independently reported their ratings of 2-year survival probability on a postindex visit multiple-choice questionnaire (response options included 100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). Prognostic discordance was defined as a more than 1 category difference between the patient and physician prognostic ratings. All patients were asked to report how they believed their oncologist would rate their 2-year survival probability. Those who correctly perceived their oncologist’s rating of their prognosis (within 1 category) were defined as knowing their oncologist’s opinion, and the rest were defined as not knowing their oncologist’s opinion. This distinction was used to categorize patients whose self-rating of their prognosis was discordant from their oncologist’s rating as either knowingly discordant or unknowingly discordant. Patient characteristics including age, sex, race/ethnicity, education, income, aggressiveness of cancer, self-efficacy with health care communication, recall of prognostic discussion with the oncologist, and end-of-life treatment preferences were evaluated as potential determinants of prognostic discordance.
Main results. 68% of patients rated their 2-year survival probability discordantly from their oncologists. Among these, 96% rated their prognosis more optimistically than their oncologists, and 89% were unaware that their opinions differed from that of their oncologists. Prognostic discordance was more common among nonwhite compared to white patients (95% versus 65%, P = 0.03). The prevalence of prognostic discordance did not significantly differ based on the other patient characteristics studied. Among patients whose prognostic ratings were discordant from their oncologist’s, 99% reported that they wanted to be involved in treatment decision making, and 70% were interested in involving palliative care when the end of life became near.
Conclusion. Patient–oncologist discordance about prognosis was common, particularly among nonwhite patients. In cases of prognostic discordance, patients rarely knew that their opinion differed from that of their oncologist, suggesting a lack of successful communication of prognostic information.
Commentary
Prior studies have noted that patients with advanced cancer perceive prognosis more optimistically than their physicians [1–3]. In a large national prospective observational study, the majority of patients receiving chemotherapy for metastatic (stage IV) lung or colorectal cancer inaccurately believed that chemotherapy was likely to be curative, potentially compromising their ability to make informed treatment decisions [4]. In the present study by Gramling et al, the authors confirm the observation that patients are more optimistic about prognosis than their oncologists, and furthermore demonstrate that most patients are unaware of the discrepancy, suggesting a failure of communication. As in prior studies, racial disparity in prognostic understanding was observed, with nonwhite patients being more likely to have overly optimistic views of their prognosis [4,5].
While the perceived 2-year survival probability is a somewhat arbitrary measure of prognostic opinion, it provides a useful representation of how one views the expected trajectory of disease. A high perceived likelihood of 2-year survival implies a view that long-term disease control can be achieved, whereas a low perceived likelihood of 2-year survival implies acknowledgement of terminal illness. This study effectively contrasts patient and physician opinions of 2-year survival probability, but it does not discriminate among clinically relevant differences in opinions within the 0–2 year prognostic range. For example, a patient whose oncologist believes his prognosis is < 6 months may be an appropriate candidate for hospice, but the patient may be unprepared to make the transition to hospice if he believes his prognosis is closer to a year or more. While the patient and oncologist may agree that 2-year survival is unlikely, they may have differing beliefs about the appropriateness of certain interventions based on their discrepant short-term prognostic views. Additional studies looking at perceived probabilities of short-term survival may be helpful in assessing patients’ readiness to transition to symptom-focused care when medically appropriate.
The authors designate 7 categories of 2-year survival probability (100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). The differences in percentage between prognostic categories are not evenly distributed, and therefore definition of discordance is non-uniform. The smaller percentage difference at the highest and lowest ends of the scale may result in overestimation of discordance at these extremes. For example, a patient rating her 2-year survival probability at 100% would be defined as having a discordant viewpoint from an oncologist rating her 2-year survival at 75% (as would be realistic for a diagnosis such as metastatic colon cancer). Given the imprecise nature of prognostication, the views of the patient and oncologist in this example are arguably similar, and perhaps should not be categorized as discordant.
As noted, patients already enrolled in hospice were excluded from the study, thus omitting a key group of patients whose prognostic views are more likely to be concordant with their physicians’ views. This group may be better captured in a prospective study of prognostic discordance among newly diagnosed advanced cancer patients after initial oncology consultation, allowing for inclusion of those who make an early transition to hospice.
Applications for Clinical Practice
Although clinicians tend to overestimate prognosis, their predictions correlate with outcomes in advanced cancer [6], and may therefore provide a useful framework for patients to understand the likely course of their disease. However, physicians often avoid explicit discussion of prognosis by shrouding prognostic information in discussions of radiographic findings, and quickly transitioning to discussion of treatment options [7]. Patients and families rarely inquire about prognosis, further limiting disclosure of prognostic information [7,8]. Even when prognostic information is explicitly stated, patients may misinterpret the information [4], potentially adversely affecting their ability to participate in shared decision making.
Some useful approaches for successfully communicating prognostic information may include asking patients what information they wish to hear before it is disclosed, providing prognostic data for patients with similar disease states while acknowledging individual variability, clearly defining the intent of proposed therapy (ie, curative versus noncurative), and asking the patient to restate information in order to assess understanding. Early involvement of palliative care specialists may help reinforce understanding about prognosis and goals of therapy, facilitate advance care planning, and reduce aggressive interventions at the end of life [2]. Ongoing research is directed at identifying effective interventions to improve communication between patients with advanced cancer and their oncologists [9].
—Irene M. Hutchins, MD
Scripps Cancer Center, La Jolla, CA
Study Overview
Objective. To assess the prevalence and determinants of patient–oncologist discordance in opinion of prognosis, and evaluate how often patients are aware of this discordance.
Design. Cross-sectional study.
Setting and participants. The study included 236 adult patients with advanced cancer and their 38 oncologists at academic and community oncology practices in Rochester, New York, and Sacramento, California. Inpatients and those already enrolled in hospice were excluded.
Main outcome measures. Patients and their oncologists independently reported their ratings of 2-year survival probability on a postindex visit multiple-choice questionnaire (response options included 100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). Prognostic discordance was defined as a more than 1 category difference between the patient and physician prognostic ratings. All patients were asked to report how they believed their oncologist would rate their 2-year survival probability. Those who correctly perceived their oncologist’s rating of their prognosis (within 1 category) were defined as knowing their oncologist’s opinion, and the rest were defined as not knowing their oncologist’s opinion. This distinction was used to categorize patients whose self-rating of their prognosis was discordant from their oncologist’s rating as either knowingly discordant or unknowingly discordant. Patient characteristics including age, sex, race/ethnicity, education, income, aggressiveness of cancer, self-efficacy with health care communication, recall of prognostic discussion with the oncologist, and end-of-life treatment preferences were evaluated as potential determinants of prognostic discordance.
Main results. 68% of patients rated their 2-year survival probability discordantly from their oncologists. Among these, 96% rated their prognosis more optimistically than their oncologists, and 89% were unaware that their opinions differed from that of their oncologists. Prognostic discordance was more common among nonwhite compared to white patients (95% versus 65%, P = 0.03). The prevalence of prognostic discordance did not significantly differ based on the other patient characteristics studied. Among patients whose prognostic ratings were discordant from their oncologist’s, 99% reported that they wanted to be involved in treatment decision making, and 70% were interested in involving palliative care when the end of life became near.
Conclusion. Patient–oncologist discordance about prognosis was common, particularly among nonwhite patients. In cases of prognostic discordance, patients rarely knew that their opinion differed from that of their oncologist, suggesting a lack of successful communication of prognostic information.
Commentary
Prior studies have noted that patients with advanced cancer perceive prognosis more optimistically than their physicians [1–3]. In a large national prospective observational study, the majority of patients receiving chemotherapy for metastatic (stage IV) lung or colorectal cancer inaccurately believed that chemotherapy was likely to be curative, potentially compromising their ability to make informed treatment decisions [4]. In the present study by Gramling et al, the authors confirm the observation that patients are more optimistic about prognosis than their oncologists, and furthermore demonstrate that most patients are unaware of the discrepancy, suggesting a failure of communication. As in prior studies, racial disparity in prognostic understanding was observed, with nonwhite patients being more likely to have overly optimistic views of their prognosis [4,5].
While the perceived 2-year survival probability is a somewhat arbitrary measure of prognostic opinion, it provides a useful representation of how one views the expected trajectory of disease. A high perceived likelihood of 2-year survival implies a view that long-term disease control can be achieved, whereas a low perceived likelihood of 2-year survival implies acknowledgement of terminal illness. This study effectively contrasts patient and physician opinions of 2-year survival probability, but it does not discriminate among clinically relevant differences in opinions within the 0–2 year prognostic range. For example, a patient whose oncologist believes his prognosis is < 6 months may be an appropriate candidate for hospice, but the patient may be unprepared to make the transition to hospice if he believes his prognosis is closer to a year or more. While the patient and oncologist may agree that 2-year survival is unlikely, they may have differing beliefs about the appropriateness of certain interventions based on their discrepant short-term prognostic views. Additional studies looking at perceived probabilities of short-term survival may be helpful in assessing patients’ readiness to transition to symptom-focused care when medically appropriate.
The authors designate 7 categories of 2-year survival probability (100%, about 90%, about 75%, about 50%, about 25%, about 10%, and 0%). The differences in percentage between prognostic categories are not evenly distributed, and therefore definition of discordance is non-uniform. The smaller percentage difference at the highest and lowest ends of the scale may result in overestimation of discordance at these extremes. For example, a patient rating her 2-year survival probability at 100% would be defined as having a discordant viewpoint from an oncologist rating her 2-year survival at 75% (as would be realistic for a diagnosis such as metastatic colon cancer). Given the imprecise nature of prognostication, the views of the patient and oncologist in this example are arguably similar, and perhaps should not be categorized as discordant.
As noted, patients already enrolled in hospice were excluded from the study, thus omitting a key group of patients whose prognostic views are more likely to be concordant with their physicians’ views. This group may be better captured in a prospective study of prognostic discordance among newly diagnosed advanced cancer patients after initial oncology consultation, allowing for inclusion of those who make an early transition to hospice.
Applications for Clinical Practice
Although clinicians tend to overestimate prognosis, their predictions correlate with outcomes in advanced cancer [6], and may therefore provide a useful framework for patients to understand the likely course of their disease. However, physicians often avoid explicit discussion of prognosis by shrouding prognostic information in discussions of radiographic findings, and quickly transitioning to discussion of treatment options [7]. Patients and families rarely inquire about prognosis, further limiting disclosure of prognostic information [7,8]. Even when prognostic information is explicitly stated, patients may misinterpret the information [4], potentially adversely affecting their ability to participate in shared decision making.
Some useful approaches for successfully communicating prognostic information may include asking patients what information they wish to hear before it is disclosed, providing prognostic data for patients with similar disease states while acknowledging individual variability, clearly defining the intent of proposed therapy (ie, curative versus noncurative), and asking the patient to restate information in order to assess understanding. Early involvement of palliative care specialists may help reinforce understanding about prognosis and goals of therapy, facilitate advance care planning, and reduce aggressive interventions at the end of life [2]. Ongoing research is directed at identifying effective interventions to improve communication between patients with advanced cancer and their oncologists [9].
—Irene M. Hutchins, MD
Scripps Cancer Center, La Jolla, CA
1. Weeks JC, Cook EF, O’Day SJ, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279:1709–14.
2. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011;29:2319–26.
3. Pronzato P, Bertelli G, Losardo P, Landucci M. What do advanced cancer patients know of their disease? A report from Italy. Support Care Cancer 1994;2:242–4.
4. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012;367:1616–25.
5. Ford D, Zapka J, Gebregziabher M, et al. Factors associated with illness perception among critically ill patients and surrogates. Chest 2010;138:59–67.
6. Glare P, Virik K, Jones M, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 2003;327:195–8.
7. Singh S, Cortez D, Maynard D, et al. Characterizing the nature of scan results discussions: insights into why patients misunderstand their prognosis. J Oncol Pract 2017:JOP2016014621.
8. Leydon GM, Boulton M, Moynihan C, et al. Cancer patients’ information needs and information seeking behaviour: in depth interview study. BMJ 2000;320:909–13.
9. Hoerger M, Epstein RM, Winters PC, et al. Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 2013;13:188.
1. Weeks JC, Cook EF, O’Day SJ, et al. Relationship between cancer patients’ predictions of prognosis and their treatment preferences. JAMA 1998;279:1709–14.
2. Temel JS, Greer JA, Admane S, et al. Longitudinal perceptions of prognosis and goals of therapy in patients with metastatic non-small-cell lung cancer: results of a randomized study of early palliative care. J Clin Oncol 2011;29:2319–26.
3. Pronzato P, Bertelli G, Losardo P, Landucci M. What do advanced cancer patients know of their disease? A report from Italy. Support Care Cancer 1994;2:242–4.
4. Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med 2012;367:1616–25.
5. Ford D, Zapka J, Gebregziabher M, et al. Factors associated with illness perception among critically ill patients and surrogates. Chest 2010;138:59–67.
6. Glare P, Virik K, Jones M, et al. A systematic review of physicians’ survival predictions in terminally ill cancer patients. BMJ 2003;327:195–8.
7. Singh S, Cortez D, Maynard D, et al. Characterizing the nature of scan results discussions: insights into why patients misunderstand their prognosis. J Oncol Pract 2017:JOP2016014621.
8. Leydon GM, Boulton M, Moynihan C, et al. Cancer patients’ information needs and information seeking behaviour: in depth interview study. BMJ 2000;320:909–13.
9. Hoerger M, Epstein RM, Winters PC, et al. Values and options in cancer care (VOICE): study design and rationale for a patient-centered communication and decision-making intervention for physicians, patients with advanced cancer, and their caregivers. BMC Cancer 2013;13:188.