Patients' perception of their prognosis has an impact on their decisions about medical care. However, the relations between prognostic understanding and quality of life (QoL) and mood are unknown. The objectives of this study were to assess perceptions of prognosis and preferences for prognostic information among patients with advanced cancer and to explore the associations of prognostic understanding with QoL and mood.
Fifty patients were assessed within 6 to 12 weeks of initiating chemotherapy for advanced gastrointestinal cancers. A 13-item questionnaire was used to assess patients' information preferences, perceptions of their prognosis and goal of therapy, and communication about end-of-life care. The Functional Assessment of Cancer Therapy-General and the Hospital Anxiety and Depression Scale were used to assess QoL and mood, respectively.
Fifty of 62 (80%) consecutive, eligible patients were enrolled. Thirty-eight of 50 patients (75%) wanted to know as many details as possible about their cancer diagnosis and treatment. However, 25 of 50 patients (50%) stated that the goal of therapy was to “cure their cancer,” and only 10 of 49 patients (22%) reported having a discussion about end-of-life preferences with their oncologist. Patients who acknowledged their illness as terminal reported lower QoL (P = .005) and higher anxiety (P = .003) compared with those who did not perceive themselves as being terminally ill.
Patients with advanced cancer are often confronted with difficult decisions regarding the receipt of additional cancer therapies and end-of-life care once previous treatments have failed. For these patients, understanding the specific goals of treatment and cancer prognosis plays a pivotal role in the informed decision-making process.[1-3] Such illness understanding is particularly relevant for patients with advanced, incurable cancers who have a poor overall survival. For example, individuals diagnosed with advanced upper gastrointestinal tumors, such as pancreatic cancer, have low rates of response to chemotherapy with minimal survival benefit.[4-9] In addition to the limited impact of chemotherapy on survival, treatment carries significant side effects and toxicities, which can negatively affect patients' quality of life (QoL).[5-12] Balancing the potential benefits and possible risks of treatment in this context necessitates an informed decision-making approach. Thus, to make sound decisions regarding care, patients with advanced cancers need an accurate understanding of their prognosis and the goals of treatment.
Patients who are well informed regarding their cancer diagnosis, treatment options, and prognosis make different decisions about their medical care compared with those who are less informed. For example, studies demonstrate that patients' willingness to accept chemotherapy depends, in part, on their understanding of the likelihood of achieving a cure with therapy.[13-15] In addition, patients who overestimate their chance of survival are more likely to receive life-extending therapies and aggressive care at the end of life, whereas those who acknowledge their terminal illness are more likely to prefer symptom-directed care and to receive end-of-life care that is consistent with their wishes. Therefore, accurate prognostic understanding may facilitate effective decisions about end-of-life care and reduce the likelihood of receiving potentially futile treatments.[18-21]
Over the past decade, researchers have begun to characterize perceptions of illness and prognosis among patients with cancer.[22-25] However, little is known about the impact of prognostic understanding on patients' QoL and mood. Acknowledging the terminal nature of one's illness may place significant emotional and psychological distress on patients. To our knowledge, no studies have concurrently examined the relations between prognostic understanding and patients' psychological outcomes or QoL. Wright and colleagues reported that discussions about end-of-life care were not associated with higher rates of depression or worry. However, although the investigators examined whether patients recalled participating in a discussion about their end-of-life care preferences, they did not assess patients' perceptions of prognosis.
We conducted a cross-sectional, observational study of patients who had incurable noncolorectal gastrointestinal cancer to explore their perceptions of prognosis and goals of care. Moreover, we sought to investigate the relations between prognostic understanding and particular patient factors, including perceptions of treatment goals, information preferences, demographic characteristics, clinical variables, and self-reported QoL and mood symptoms. By exploring associations between patients' illness perceptions and QoL and mood, we sought to identify those who may require additional support in coping with their illness and related treatment decision making.
MATERIALS AND METHODS
The sample included ambulatory patients at the Massachusetts General Hospital Cancer Center who were receiving chemotherapy for newly diagnosed, advanced, noncolorectal gastrointestinal cancer at the time of enrollment. Patients were eligible for study participation if they had a confirmed, new diagnosis of advanced gastroesophageal, hepatobiliary, or pancreatic cancer; were able to read and respond to questions in English; and were not receiving treatment with curative intent. We confirmed the intent of therapy by reviewing the chemotherapy consent forms in the electronic medical record. On these consent forms, the primary oncologist must select the goals of therapy from the following options: “cure,” “prolong life without getting rid of the cancer completely,” or “palliation.” Patients who were receiving treatment with curative intent were not eligible for this study.
All gastrointestinal oncologists at the Massachusetts General Hospital Cancer Center agreed to participate in this study. Study staff identified potential participants through the new patient database of the Massachusetts General Hospital Gastrointestinal Cancer Center and followed patients until their staging diagnostics were complete. A trained research assistant obtained permission from the treating oncologist by email to approach eligible patients during regularly scheduled oncology clinic visits within 6 to 12 weeks after the initiation of the first chemotherapy regimen. We chose this recruitment window to ensure that patients would have several opportunities to discuss goals of therapy and prognosis with their oncology providers before study participation. In addition, because of the sensitive nature of the items on the questionnaire, we did not want to enroll study participants immediately after diagnosis. Willing patients provided written informed consent and completed the self-report questionnaires during their clinic visits. Study staff subsequently obtained clinical data from the patients' electronic medical records. We recruited patients consecutively until we achieved a sample size of 50 participants, and we documented reasons for refusal to participate.
We measured self-reported prognostic perceptions using the 13-item Prognosis and Treatment Perceptions Questionnaire (PTPQ), which assesses patient beliefs regarding: 1) the likelihood of cure, 2) the importance and helpfulness of knowing about prognosis, 3) the primary goal of cancer care, 4) preference for information about treatment, and 5) satisfaction with the quality of information received about prognosis and treatment. We originally adapted the PTPQ based on a questionnaire that was developed for parents of children with cancer and additional validated items from previous studies.[26-30] We then performed cognitive interviews with 15 patients who had metastatic lung cancer and conducted content analyses to refine the questionnaire and ensure its content validity, readability, and acceptability. Patients denied experiencing discomfort answering the survey questions. We modified 8 questions based on participants' responses, primarily by defining medical terms that were difficult for them to comprehend. For example, we modified all questions that included the word prognosis by defining it as “the expected outcome of your cancer over time.” We eliminated 2 questions because of their repetitive nature. We retained 5 questions without modifications, because none of the participants reported any difficulty with answering or comprehending those questions.
We evaluated patients' perception of their prognosis using 2 previously developed items. First, participants rated the likelihood that they would be cured of cancer on a 7-point scale (ranging from “no chance/0% chance” to “extremely likely/greater than 90% chance”).[16, 31] We dichotomized responses as incurable (ie, “no chance” to “unlikely chance”) versus likely to be cured (ie, “somewhat likely” to “extremely likely”). Second, participants rated their medical status with regard to current health and terminal illness using a validated 4-item scale that has been used extensively in prior studies.[26, 28-30] We dichotomized the responses as either “terminally ill” or “not terminally ill.”
Information preferences and treatment goals
We used additional items from the PTPQ to evaluate patients' information preferences and treatment goals. Specifically, participants reported their preference for receiving information about diagnosis and treatment (“prefer not to hear a lot of details,” “want to hear details only in certain situations,” or “want to hear as many details as possible”). We also asked participants to choose their primary goal of cancer treatment among the following options: “to lessen suffering,” “to be able to keep hoping,” “to make sure I have done everything,” “to extend my life as long as possible,” “to cure my cancer,” “to help cancer research,” and “other.” Participants rated the importance of knowing about their prognosis on a 5-point scale (ranging from “extremely important,” to “not at all important”). In addition, we asked participants to rate how they felt about the amount of information they had received regarding their prognosis on a 3-point scale (“wishing for more information,” “having the right amount of information,” or “wishing for less information”). Finally, we asked participants whether they had had a discussion with their oncologists regarding end-of-life care, and the responses were dichotomized as “yes” or “no.”
Sociodemographic and clinical factors
Each participant completed a demographic questionnaire that included age, sex, race, ethnicity, marital status, income, and education level. We reviewed participants' electronic medical records to obtain data on cancer diagnosis, stage of disease, Eastern Cooperative Oncology Group performance status, and the number of oncology visits.
We measured anxiety and depression symptoms with the 14-item Hospital Anxiety and Depression Scale (HADS). The HADS consists of 2 subscales for anxiety and depression symptoms in the past week, with scores ranging from 0 (no distress) to 21 (maximum distress). The HADS has demonstrated strong psychometric properties in samples of adults with cancer. Higher total and subscale scores indicate higher levels of distress.
Quality of life
We used the well validated Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire to assess QoL. The FACT-G contains 28 items that comprise 4 subscales assessing physical, functional, emotional, and social well being during the past week. Higher total and subscale scores indicate better QoL.
To evaluate the feasibility of recruiting patients and collecting data on prognostic understanding, we identified the number of consecutive patients needed to enroll a sample of 50 participants and the reasons for refusing to participate. To identify the level of accuracy in prognostic understanding among participants, we reported responses (frequencies) to the PTPQ items, including perceptions of the likelihood of cure (incurable vs likely to be cured) and terminal illness status (terminally ill vs not terminally ill). Finally, we explored associations between the 2 prognostic understanding variables (likelihood of cure and terminal illness status) and patient demographic/clinical factors by conducting chi-square and Fisher exact tests for categorical variables as well as t tests and analyses of variance for continuous variables, with a 2-sided P < .05. To conduct all statistical tests, we used IBM SPSS Statistics, version 19.
Sample characteristics (n = 50) are presented in Table 1. Participants (mean ± standard deviation age, 66.8 ± 10.4 years) were primarily white (94%) and male (72%). The majority of participants had a diagnosis of hepatobiliary/pancreatic cancer (78%). Participants attended a mean ± standard deviation of 7.9 ± 1.8 oncology visits before study enrollment.
Table 1. Participants Baseline Demographic and Clinical Characteristics, n = 50
Mean ± SD or Frequency (%)
Abbreviations: USD, United States dollars; SD, standard deviation.
66.8 ± 10.4
Divorced and widowed
No. of oncology visits since diagnosis
7.9 ± 1.8
Feasibility of Recruitment and Data Collection
We approached a total of 62 consecutive eligible patients between October 2010 and September 2011 to achieve a sample size of 50 participants (enrollment rate, 80%). Among nonparticipants (n = 12), 3 patients were excluded based on their oncologists' request, and 9 patients declined to participate either because they disliked survey questionnaires in general (n = 6) or because they were feeling too ill (n = 3).
Among the participants, 54% (27 of 50 patients) perceived that their cancer was likely to be cured (Fig. 1), and less than half (46%; 23 of 50 patients) perceived themselves to be terminally ill. Those participants who acknowledged their terminal illness also were more likely to state that their cancer was incurable (Fisher exact test; P < .001), demonstrating consistency in their understanding.
Associations of Prognostic Understanding With Treatment Goals and Information Preferences
The majority of participants endorsed that it was “extremely” (64%; 32 of 50 patients) or “very” (20%; 10 of 50 patients) important to know about their prognosis (Fig. 1). Most participants (75%; 38 of 50 patients) also endorsed that they wanted to hear as many details as possible related to their cancer and its treatment (Fig. 2). In addition, approximately two-thirds (68%; 24 of 50 patients) felt that they currently had the right amount of information about their prognosis, whereas one-third (32%; 16 of 50 patients) wanted to know more. With regard to treatment goals, approximately half (52%; 26 of 50 patients) endorsed that their primary treatment goal was to cure their cancer (Fig. 2). Most participants (78%; 39 of 50 patients) reported that they had not discussed end-of-life care with their oncologists.
Participants were more likely to choose curing their cancer as their primary treatment goal if they reported that their cancer was likely curable (vs incurable: Fisher exact test; P < .001). Compared with those who believed their cancer was incurable, participants who endorsed that their cancer was likely to be cured did not differ in their preference for treatment and prognostic information, desire for knowledge about treatment and prognosis, frequency of discussion with their oncologists about prognosis, or their report of having an end-of-life discussion with their oncologist.
Associations of Prognostic Understanding With Sociodemographic and Clinical Factors
Participants who endorsed that their cancer was likely to be cured did not differ by age, sex, level of education, income, Eastern Cooperative Oncology Group performance status, or number of oncology visits since cancer diagnosis compared with those who thought their cancer was incurable.
Associations of Prognostic Understanding With Quality of Life and Psychological Distress
Participants who stated that their cancer was likely to be cured reported higher overall QoL (mean score, 80.86 vs 73.13; P = .04), social well being (mean score, 24.79 vs 22.15; P = .02), and emotional well being (mean score, 18.19 vs 14.95; P = .01) compared with those who thought their cancer was incurable (Table 2). The 2 groups did not differ significantly with respect to physical or functional well being or symptoms of anxiety and depression.
Table 2. Association Between Prognostic Understanding (Curable vs Incurable) and Quality of Life and Mood
Abbreviations: FACT-G, Functional Assessment of Cancer Therapy-General; HADS, Hospital Anxiety and Depression Scale; SD, standard deviation.
P values were derived from the independent sample t test for continuous variables.
80.86 ± 13.46
73.13 ± 11.76
24.79 ± 3.02
22.15 ± 4.64
18.19 ± 3.35
14.95 ± 4.36
17.77 ± 5.30
15.22 ± 5.21
20.32 ± 5.72
20.81 ± 4.49
3.48 ± 3.50
5.38 ± 3.41
4.51 ± 3.69
5.40 ± 2.92
Participants who acknowledged their terminal illness reported lower overall QoL (mean score, 71.95 vs 82.20; P = .005), emotional well being (mean score, 14.22 vs 18.85; P < .001), and functional well being (mean score, 15.07 vs 18.12; P = .04) as well as greater anxiety symptom severity (mean score, 5.96 vs 3.00; P = .003) compared with those who did not perceive themselves as being terminally ill (Table 3). The 2 groups did not differ significantly by physical or social well being or by severity of depression symptoms.
Table 3. Association Between Illness Perception (Not Terminal vs Terminal) and Quality of Life and Mood
Abbreviations: FACT-G, Functional Assessment of Cancer Therapy-General; HADS, Hospital Anxiety and Depression Scale; SD, standard deviation.
P values were derived from the independent sample t test for continuous variables.
82.20 ± 13.08
71.95 ± 10.98
24.39 ± 3.38
22.67 ± 4.45
18.85 ± 2.98
14.22 ± 3.91
18.12 ± 5.17
15.07 ± 5.09
21.03 ± 5.57
20.00 ± 4.62
3.00 ± 3.43
5.96 ± 3.07
4.19 ± 3.69
5.62 ± 2.80
Despite patients' strong desires for detailed information about their cancer treatment and prognosis, the majority inaccurately perceived that they were being treated with curative intent and believed that their cancer was likely to be cured. By comparison, patients with an accurate prognostic understanding were more likely to have realistic treatment goals. In addition, we observed that accurate prognostic understanding and acknowledgment of terminal illness were associated with worse QoL and anxiety symptoms.
Although the medical community has placed a strong emphasis on the importance of frank discussions and accurate prognostic disclosure for patients and their families, our findings raise questions regarding how best to support patients who acknowledge their illness as terminal. We observed that patients who had an accurate prognostic understanding and those who acknowledged their terminal illness had significantly worse QoL and anxiety symptoms. This finding suggests that, as patients gain a more accurate understanding of the nature and the likely outcome of their illness, they require more psychosocial support to help them cope with their diagnosis. These results should not be used to justify avoiding prognostic disclosure given patients' strong preference for information. In fact, considering the degree of prognostic misperception, more discussions are warranted to convey prognostic information more accurately while providing adequate support for patients.
Unfortunately, only 22% of patients in our study reported discussing their end-of-life wishes with their oncologists. Physicians' inability to engage patients and families in these essential conversations may contribute to the anxiety, uncertainty, and isolation that some patients experience. Furthermore, even patients who responded that they had an end-of-life discussion with their oncologist did not report a more accurate understanding of their prognosis. Although this may be because of the lack of statistical power given the small number of patients, it also may reflect the quality of conversations about end-of-life care. More research is necessary to determine how best to convey prognostic information to patients in an emotionally sensitive manner while providing adequate psychological support.
To our knowledge, this is the first study to report that patients' accurate illness perception is associated with higher anxiety and worse QoL. This is an important finding, because previous studies suggested that end-of-life discussions were not associated with worse psychological distress. In our study, however, we focused on the associations between psychological distress and both illness perception and prognostic understanding as opposed to end-of-life care discussions. Patients may experience various degrees of emotional distress, depending on the context of end-of-life care discussions and the amount of information that they retain. Moreover, although oncologists may raise the topic of end-of-life care, such discussions may not translate into more accurate prognostic understanding in patients. One could imagine that grappling with the terminal nature of an illness would be the most distressing aspect of prognostic understanding. Our findings highlight the need for a comprehensive approach to assist patients in clarifying their illness understanding while coping with the psychosocial ramifications of their terminal prognosis.
By engaging patients in honest and empathic end-of-life discussions to address their fears, clinicians may help patients cope better with their incurable illness. It is possible that the quality of communication between patients and their physicians may play a role in patients' psychological response and their ability to cope with such information. Outlining realistic goals that patients and families can look forward to may provide an avenue for maintaining hope in light of a life-threatening illness. Thus, as physicians engage patients in end-of-life discussions, screening and identifying those at risk for psychological distress and referring them for appropriate services is essential to ensure they are receiving adequate care and support.
Several of our findings are consistent with and build upon the results of previous research. First, we observed that patients preferred detailed information about their cancer diagnosis, treatment goals, and prognosis. A prior study of patients with metastatic cancer demonstrated that 85% of patients wanted to know more details about their prognosis. Despite these data confirming that patients prefer to receive detailed information about their illness and prognosis, recent data also demonstrate that patients continue to have serious misconceptions about the goals of treatment. In a recent study, 69% of patients with metastatic lung cancer and 81% of patients with metastatic colorectal cancer did not understand that chemotherapy was unlikely to cure their disease. Our study also demonstrated that over half of patients with incurable noncolorectal gastrointestinal cancers believed that the primary treatment goal was to cure their illness. Such unrealistic treatment goals are not surprising given that the majority also perceived that their cancers likely were curable.
Our study has several important limitations. One of the main limitations is the small, relatively homogenous sample of patients with noncolorectal gastrointestinal cancers included in this study. Therefore, the findings may not generalize to patients with lower education, minority groups, or patients from different geographic areas. The small sample size also may have affected our ability to detect actual differences in prognostic understanding by demographic and clinical factors because of limited statistical power. Second, we did not examine patients' use of psychiatric, palliative care, and social work services, which may improve patients' coping and mood. However, it is unlikely that study participants used these services extensively this early in the course of their illness. Third, although our findings suggest an association between prognostic understanding and QoL and mood, the data do not allow us to determine the direction of this association. It is also plausible that patients with lower QoL and more anxiety have a more realistic perception of their illness and prognosis. Fourth, the cross-sectional nature of this study does not allow us to examine the temporal relation between goals of care discussions and patients' QoL and mood symptoms. Finally, survey methods may underestimate the numbers of patients who actually understood the nature of their illness and treatment goals.
In summary, we demonstrated that patients with advanced noncolorectal gastrointestinal malignancies hold significant misconceptions about the goal of their cancer treatment and prognosis despite their strong wishes for detailed information relating to their cancer. Patients with accurate perceptions of their prognosis had more realistic treatment goals. It is noteworthy that accurate prognostic understanding was associated with lower QoL and higher anxiety symptoms, which highlights an important need for more psychosocial support of patients as they come to terms with their terminal illness. Future research should focus on determining the optimal timing and method to deliver prognostic information along with adequate assessment of patients' emotional and psychological needs to facilitate effective coping strategies after the delivery of such information.
This work was supported by Golf Fights Cancer and by the Joanne Hill Monahan Fund.