Preferences for life and functional prognostic information among Japanese patients undergoing first-time chemotherapy
Highlight box
Key findings
• For patients with cancer undergoing chemotherapy, functional prognosis is important information, but life prognosis remains equally important.
What is known and what is new?
• Previous studies suggest that patients with cancer seek information about functional prognosis rather than life prognosis.
• We surveyed patients with cancer, especially those undergoing chemotherapy for the first time, to explore their preferences regarding prognostic information. Consistent with previous studies, patients desired information about their functional prognosis. Notably, those undergoing cancer chemotherapy expressed interest in learning about life prognosis as well as functional prognosis. Furthermore, from the results of the subgroup analysis, for patients receiving life-sustaining/palliative care, information about life prognosis is important, and they tend to seek information proactively. In contrast, for patients receiving adjuvant therapy, suggesting that older adult patients tend to be less interested in knowing their life prognosis.
What is the implication, and what should change now?
• Prognostic information for patients with cancer may differ depending on their circumstances. However, in all situations, patients want information on functional prognosis in addition to life prognosis, and healthcare providers should strive to provide appropriate informational support.
Introduction
Background
Cancer is a leading cause of death in Japan (1), and many patients require additional information after their diagnoses (2). Providing information to patients with cancer may reduce uncertainty, promote a sense of control, encourage patient involvement in decision-making, improve treatment satisfaction and coping skills, and increase understanding of the disease (3,4). This provides an opportunity to contribute toward patient-centered decision-making. Prognostic information is especially needed by cancer patients (5) and encompasses life prognosis, defined as the anticipated duration of a patient’s life; functional prognosis, referring to the ability to maintain essential functions necessary for self-sufficiency; and uncertainty prognosis, relating to the potential for unpredictable or sudden events (6).
Rationale and knowledge gap
Few studies have examined the information needs of patients with cancer regarding life or functional prognoses. A study on Japanese patients with cancer showed that they were more interested in understanding their functional prognoses than their life prognoses (7). However, the study was conducted in patients who were being treated for cancer or had regular follow-up visits, and the results were not limited to a specific cancer progression process. Information needs vary across patient groups and the continuum of care (8). Therefore, it is important to regularly evaluate prognostic perceptions and provide appropriate explanations (9).
Patients with cancer receive a substantial amount of informational support when they first undergo chemotherapy. However, despite healthcare providers providing information on the purpose, efficacy, and duration of treatment, side effects, and medical costs, information about life prognosis is often provided only to patients with cancer who actively request it, while information regarding functional prognosis remains limited.
Objective
This study aimed to examine the preferences for prognostic information among patients with cancer undergoing chemotherapy for the first time. Our findings may help enhance the relevance and usefulness of prognostic information provided by healthcare providers during chemotherapy. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-145/rc).
Methods
Study design and participants
This cross-sectional study examined the preferences for prognostic information ascertained at a single point in time in a longitudinal study (survey on health literacy among cancer patients) conducted from October 2022 to January 2024. Health literacy surveys were conducted before the start of chemotherapy and after completion of one course. The data used in this study were collected after completion of one course of cancer chemotherapy to evaluate patient preferences for prognostic information.
Participants were recruited by physicians at the Prefectural Cancer Hospital. We included patients with cancer aged >18 years who were receiving cancer chemotherapy for the first time. The exclusion criterion was the inability to read, write, or communicate in Japanese. For the sample size design, a confidence interval-based method (interval estimation) was used to determine the required sample size (48 cases). Based on an 80% response rate from a previous study conducted at our hospital, the target sample size was set at 58 participants. This study utilized data from a questionnaire administered after the completion of one course of cancer chemotherapy, along with information extracted from electronic medical records, including age, sex, cancer type, employment status, treatment purpose, Eastern Cooperative Oncology Group performance status (ECOG-PS) score, and living situation (with or without a family).
The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the Institutional Review Board of Shizuoka Cancer Center (No. T2022-16) and informed consent was obtained from all individual participants.
Variables and measures
The variables were defined based on previous studies (7,10-15) and discussions among researchers, and a questionnaire was developed. Participants were asked to self-report whether they had searched for information about their illness, treatment, and prognosis during the period between the initiation of treatment and the questionnaire survey. Regarding prognostic information, participants were asked to rate the extent to which they would like to know about life and functional prognoses (motor, thinking, eating, and speaking prognoses) on a six-point scale from 1 (strongly disagree) to 6 (strongly agree) (7). Functional prognosis was defined as “the objective ability (functional status) that an individual can demonstrate”, and cancer patients’ preferences for prognosis information were investigated. By understanding trends in preferences for functional prognosis, it is believed that it will be possible to consider information support that respects patient values at each life stage. Our functional prognosis assessed in this study differs from quality of life (QOL), which can be maintained through subjective experience (appropriate care and psychological acceptance) even when physical function declines. Therefore, no existing evaluation indicators were used, and similar evaluations were used for comparison with the previous study. The purpose of the questionnaire was to assess participant’ knowledge of cancer chemotherapy, the level of anxiety about adverse events (AEs), information-seeking behavior, and preference for prognostic information. Knowledge of cancer chemotherapy was measured using a five-point scale ranging from 1 (strongly disagree) to 5 (strongly agree). Anxiety was measured on an 11-point scale (0 = no anxiety; 10 = very strong anxiety). Information-seeking behavior was defined as “the experience of searching for information about the effects of treatment, life prognosis, and impact on life using any available means, such as the Internet, books, or acquaintances,” and was treated as a binary variable based on its presence or absence.
Statistical analysis
First, we conducted descriptive statistics on participant characteristics and the results of their responses to each questionnaire item. The degree of knowledge about cancer chemotherapy was divided into two groups according to the responses, which were categorized as “insufficient” (scores of 1–3) and “sufficient” (scores of 4–5). A similar method was employed to categorize anxiety, with responses ranging from 0 to 5 (low group) and 6 to 10 (high group), divided into two groups. The categorization of prognostic information followed the method of Hamano et al. (7), with responses grouped as “strongly agree/agree” and “other”. Missing data from the questionnaire were excluded from the analysis. However, to prevent missing data, a researcher was present while participants completed the questionnaire and provided clarification when participants did not understand the intent of a question. Differences between the groups were evaluated using the chi-square or Fisher’s exact probability tests. Furthermore, information regarding prognosis was compared with the results of a study by Hamano et al. (7), which was the first to investigate prognostic preferences among Japanese patients with cancer. In each study, a chi-square test was performed to examine the significance of the prognostic information, and if significant, Bonferroni’s multiple comparison test was performed. The correlation between prognostic preferences and participant characteristics was examined using Spearman’s correlation coefficients. Age and the six-point Likert scale for prognostic preferences were treated as continuous variables, whereas the other variables were analyzed as nominal dichotomous variables. The probability values were two-sided, and statistical significance was set at P<0.05. All analyses were performed using JMP 18.1.1 statistical software (JMP Statistical Discovery, NC).
Results
Of the 58 included participants, three discontinued treatment and one withdrew consent. After completing one course of chemotherapy, 54 participants were included in the final analysis. The mean age ± standard deviation was 66.0±11.9 years, and 30 patients (55.6%) were male. The most common cancer type was gastrointestinal (n=36, 66.7%). In addition, 18 (33.3%) received adjuvant chemotherapy. ECOG-PS was 0 in 31 (57.4%) patients and 1 in 19 (35.2%). The participant characteristics are shown in Table 1.
Table 1
| Variables | n | % |
|---|---|---|
| Age ≥65 years | 33 | 61.1 |
| Sex | ||
| Male | 30 | 55.6 |
| Female | 24 | 44.4 |
| Cancer type | ||
| Gastrointestinal cancer | 36 | 66.7 |
| Respiratory cancer | 12 | 22.2 |
| Skin cancer | 6 | 11.1 |
| Therapeutic purpose | ||
| Life-sustaining/palliative | 36 | 66.7 |
| Adjuvant | 18 | 33.3 |
| Cancer surgical history | ||
| Yes | 32 | 59.3 |
| No | 22 | 40.7 |
| Cancer radiotherapy history | ||
| Yes | 5 | 9.3 |
| No | 49 | 90.7 |
| Type of anticancer drug administration route | ||
| Intravenous ± oral administration | 45 | 83.3 |
| Oral administration only | 9 | 16.7 |
| Living with family | ||
| Yes | 52 | 96.3 |
| Older adults-only households† | 18 | |
| No | 2 | 3.7 |
| Occupation | ||
| Yes | 27 | 50 |
| No | 27 | 50 |
| ECOG-PS | ||
| 0 | 31 | 57.4 |
| 1 | 19 | 35.2 |
| 2 | 4 | 7.4 |
†, all-older adult households. ECOG-PS, Eastern Cooperative Oncology Group performance status.
In total, 30 patients (55.6%) answered “strongly agree”, “agree”, or “somewhat agree” to the question about whether they wished to know their life prognoses. Regarding functional prognoses, 33 (61.1%), 27 (50.0%), 35 (66.0%), and 32 (59.3%) patients expressed interest in motor, thinking, eating, and speaking functions, respectively. Life prognosis ranked fourth overall, following eating, motor, and speaking prognoses and also ranked fourth for the “strongly agree” or “agree” responses (Table 2). In the life-sustaining/palliative group, life prognosis likewise ranked fourth for both overall preference and the “strongly agree” or “agree” responses. In contrast, in the adjuvant group, life prognosis ranked third, equal to motor and thinking prognoses. Among those who answered “strongly agree” or “agree”, it ranked second, with a percentage comparable to that for functional prognosis. Across all participants, there was no significant difference in the percentage of respondents who answered “strongly agree”, “agree”, or “somewhat agree” to questions regarding the type of prognostic information (χ2=3.20, df=4, P=0.53). Similar results were obtained for the life-sustaining/palliative (χ2=2.79, df=4, P=0.59) and adjuvant (χ2=1.51, df=4, P=0.82) groups.
Table 2
| Variables | Life prognosis | Motor prognosis | Thinking prognosis | Eating prognosis | Speaking prognosis |
|---|---|---|---|---|---|
| All participants (n=54)† | |||||
| Strongly agree | 6 (11.1) | 8 (14.8) | 7 (13.0) | 9 (17.0) | 12 (22.2) |
| Agree | 16 (29.6) | 19 (35.2) | 10 (18.5) | 14 (26.4) | 13 (24.1) |
| Somewhat agree | 8 (14.8) | 6 (11.1) | 10 (18.5) | 12 (22.6) | 7 (13.0) |
| Somewhat disagree | 6 (11.1) | 5 (9.3) | 10 (18.5) | 5 (9.4) | 7 (13.0) |
| Disagree | 13 (24.1) | 12 (22.2) | 11 (20.4) | 7 (13.2) | 9 (16.7) |
| Strongly disagree | 5 (9.3) | 4 (7.4) | 6 (11.1) | 6 (11.3) | 6 (11.1) |
| Life-sustaining/palliative only (n=36)† | |||||
| Strongly agree | 3 (8.3) | 5 (13.9) | 5 (13.9) | 6 (17.1) | 8 (22.2) |
| Agree | 13 (36.1) | 15 (41.2) | 7 (19.4) | 10 (28.6) | 11 (30.6) |
| Somewhat agree | 6 (16.7) | 5 (13.9) | 7 (19.4) | 8 (22.9) | 4 (11.1) |
| Somewhat disagree | 3 (8.3) | 3 (8.3) | 6 (16.7) | 2 (5.7) | 4 (11.1) |
| Disagree | 8 (22.2) | 5 (13.9) | 6 (16.7) | 4 (11.4) | 5 (13.9) |
| Strongly disagree | 3 (8.3) | 3 (8.3) | 5 (13.9) | 5 (14.3) | 4 (11.1) |
| Adjuvant only (n=18) | |||||
| Strongly agree | 3 (16.7) | 3 (16.7) | 2 (11.1) | 3 (16.7) | 4 (22.2) |
| Agree | 3 (16.7) | 4 (22.2) | 3 (16.7) | 4 (22.2) | 2 (11.1) |
| Somewhat agree | 2 (11.1) | 1 (5.6) | 3 (16.7) | 4 (22.2) | 3 (16.7) |
| Somewhat disagree | 3 (16.7) | 2 (11.1) | 4 (22.2) | 3 (16.7) | 3 (16.7) |
| Disagree | 5 (27.8) | 7 (38.9) | 5 (27.8) | 3 (16.7) | 4 (22.2) |
| Strongly disagree | 2 (11.1) | 1 (5.6) | 1 (5.6) | 1 (5.6) | 2 (11.1) |
Data are presented as n (%). †, n=1 missing (eating prognosis) due to post-esophagectomy oral intake issues.
Each prognostic variable exhibited a positive correlation (r=0.60–0.89; P<0.001; Table 3). Similar results were obtained when life-sustaining/palliative and adjuvant groups were examined separately.
Table 3
| Type of prognosis | Life prognosis | Motor prognosis | Thinking prognosis | Eating prognosis | Speaking prognosis |
|---|---|---|---|---|---|
| Life prognosis | – | ||||
| Motor prognosis | 0.76*** | – | |||
| Thinking prognosis | 0.60*** | 0.73*** | – | ||
| Eating prognosis | 0.67*** | 0.79*** | 0.80*** | – | |
| Speaking prognosis | 0.67*** | 0.76*** | 0.76*** | 0.89*** | – |
***, P<0.001.
Across all participants, compared to the study by Hamano et al. (7), no significant difference was found in the proportions of “strongly agree” and “agree” for any prognostic information. The largest difference between the two studies was found for life prognosis (χ2=3.65, df=1, P=0.056). Similar results were obtained in the adjuvant group. Conversely, significant differences were found in the life-sustaining/palliative group for life prognosis (χ2=4.30, df=1, P=0.04, φ=0.16) (Table 4). Utilizing the study by Hamano et al. (7), we analyzed the significance of the proportions of participants who responded “strongly agree” or “agree” to each prognostic information set and found a significant difference (χ2=14.44, df=4, P=0.006). Subsequent multiple comparisons using Bonferroni correction (adjusted alpha level, alpha =0.005) revealed a significant difference between life prognosis and dietary prognosis (χ2=8.07, df=1, P=0.004, φ=0.17) or speaking prognosis (χ2=11.88, df=1, P<0.001, φ=0.21). However, across all participants, there was no significant difference in the type of prognostic information (χ2=4.33, df=4, P=0.36). Similar results were obtained for the life-sustaining/palliative (χ2=4.34, df=4, P=0.36) and the adjuvant group (χ2=0.69, df=4, P=0.95).
Table 4
| Variables | Previous study (n=132), n (%) | This study | |||||||
|---|---|---|---|---|---|---|---|---|---|
| All participants (n=54)† | Life-sustaining/palliative only (n=36)† | Adjuvant only (n=18) | |||||||
| n (%) | P | n (%) | P | n (%) | P | ||||
| Life prognosis | 35 (26.5) | 22 (40.7) | 0.056 | 16 (44.4) | 0.043 | 6 (33.3) | 0.58 | ||
| Motor prognosis | 56 (42.4) | 27 (50.0) | 0.35 | 20 (55.6) | 0.16 | 7 (38.9) | 0.78 | ||
| Thinking prognosis | 47 (34.8) | 17 (31.5) | 0.59 | 12 (33.3) | 0.80 | 5 (27.8) | 0.51 | ||
| Eating prognosis | 57 (43.2) | 23 (43.4) | 0.98 | 16 (45.7) | 0.79 | 7 (38.9) | 0.73 | ||
| Speaking prognosis | 62 (47.0) | 25 (46.3) | 0.84 | 19 (52.8) | 0.54 | 6 (33.3) | 0.28 | ||
†, n=1 missing (eating prognosis) due to post-esophagectomy oral intake issues.
The relationships between knowledge of cancer chemotherapy, level of anxiety about AEs, information-seeking behavior, and the desire to obtain prognostic information are shown in Table 5. Across all participants, significant differences were found only between eating prognosis and knowledge of cancer chemotherapy (χ2=4.57, df=1, P=0.03, φ=0.29). When the life-sustaining/palliative group was examined, a significant difference was obtained between life prognosis and information-seeking behavior (χ2=4.05, df=1, P=0.04, φ=0.34). Conversely, no significant differences were observed between adjuvant groups.
Table 5
| Variables | Knowledge of cancer chemotherapy | Level of anxiety about AEs | Information-seeking behavior | ||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|
| Sufficient [4–5] | Insufficient [1–3] | P | High [6–10] | Low [0–5] | P | Yes | No | P | |||
| All participants (n=54) | |||||||||||
| Life prognosis | 0.22 | 0.55 | 0.097 | ||||||||
| Strongly agree/agree | 8 | 14 | 5 | 17 | 14 | 8 | |||||
| Other† | 17 | 15 | 10 | 22 | 13 | 19 | |||||
| Motor prognosis | 0.17 | 0.76 | 0.41 | ||||||||
| Strongly agree/agree | 10 | 17 | 7 | 20 | 15 | 12 | |||||
| Other† | 15 | 12 | 8 | 19 | 12 | 15 | |||||
| Thinking prognosis | 0.61 | 0.40 | 0.77 | ||||||||
| Strongly agree/agree | 7 | 10 | 6 | 11 | 9 | 8 | |||||
| Other† | 18 | 19 | 9 | 28 | 18 | 19 | |||||
| Eating prognosis | 0.03 | 0.96 | 0.88 | ||||||||
| Strongly agree/agree | 7 | 16 | 6 | 17 | 11 | 12 | |||||
| Other† | 18 | 12 | 8 | 22 | 15 | 15 | |||||
| Speaking prognosis | 0.75 | 0.97 | 0.41 | ||||||||
| Strongly agree/agree | 11 | 14 | 7 | 18 | 14 | 11 | |||||
| Other† | 14 | 15 | 8 | 21 | 13 | 16 | |||||
| Life-sustaining/palliative only (n=36) | |||||||||||
| Life prognosis | 0.65 | >0.99 | 0.04 | ||||||||
| Strongly agree/agree | 6 | 10 | 4 | 12 | 11 | 5 | |||||
| Other† | 9 | 11 | 6 | 14 | 7 | 13 | |||||
| Motor prognosis | 0.82 | >0.99 | 0.50 | ||||||||
| Strongly agree/agree | 8 | 12 | 6 | 14 | 11 | 9 | |||||
| Other† | 7 | 9 | 4 | 12 | 7 | 9 | |||||
| Thinking prognosis | >0.99 | 0.70 | 0.48 | ||||||||
| Strongly agree/agree | 5 | 7 | 4 | 8 | 7 | 5 | |||||
| Other† | 10 | 14 | 6 | 18 | 11 | 13 | |||||
| Eating prognosis | 0.20 | >0.99 | 0.88 | ||||||||
| Strongly agree/agree | 5 | 11 | 4 | 12 | 8 | 8 | |||||
| Other† | 10 | 9 | 5 | 14 | 9 | 10 | |||||
| Speaking prognosis | 0.46 | >0.99 | 0.09 | ||||||||
| Strongly agree/agree | 9 | 10 | 5 | 14 | 12 | 7 | |||||
| Other† | 6 | 11 | 5 | 12 | 6 | 11 | |||||
| Adjuvant only (n=18) | |||||||||||
| Life prognosis | 0.32 | 0.61 | >0.99 | ||||||||
| Strongly agree/agree | 2 | 4 | 1 | 5 | 3 | 3 | |||||
| Other† | 8 | 4 | 4 | 8 | 6 | 6 | |||||
| Motor prognosis | 0.14 | 0.60 | >0.99 | ||||||||
| Strongly agree/agree | 2 | 5 | 1 | 6 | 4 | 3 | |||||
| Other† | 8 | 3 | 4 | 7 | 5 | 6 | |||||
| Thinking prognosis | 0.61 | 0.58 | >0.99 | ||||||||
| Strongly agree/agree | 2 | 3 | 2 | 3 | 2 | 3 | |||||
| Other† | 8 | 5 | 3 | 10 | 7 | 6 | |||||
| Eating prognosis | 0.14 | >0.99 | >0.99 | ||||||||
| Strongly agree/agree | 2 | 5 | 2 | 5 | 3 | 4 | |||||
| Other† | 8 | 3 | 3 | 8 | 6 | 5 | |||||
| Speaking prognosis | 0.32 | >0.99 | 0.62 | ||||||||
| Strongly agree/agree | 2 | 4 | 2 | 4 | 2 | 4 | |||||
| Other† | 8 | 4 | 3 | 9 | 7 | 5 | |||||
†, other: somewhat agree, somewhat disagree, disagree, or strongly disagree. AEs, adverse events.
Among the participants, gastrointestinal cancers exhibited a negative correlation with speaking prognosis (r=−0.30, P=0.03). Respiratory cancer showed a positive correlation with motor function (r=0.28, P=0.04) and speaking prognosis (r=0.32, P=0.02). ECOG-PS ≥2 showed a positive correlation with eating prognosis (r=0.30, P=0.03) (Table 6). Examination of the life-sustaining/palliative group revealed that intravenous oral administration was negatively correlated with motor (r=−0.34, P=0.045) and speaking prognoses (r=−0.34, P=0.04). Similar to the results for all participants, ECOG-PS ≥2 showed a positive correlation with eating prognosis (r=0.37, P=0.03). Furthermore, older adult-only households had a positive correlation with thinking (r=0.4, P=0.02) and eating (r=0.38, P=0.03) prognoses. In the adjuvant group, however, there was a negative correlation between age and life prognosis (r=−0.59, P=0.009).
Table 6
| Variables | Life prognosis | Motor prognosis | Thinking prognosis | Eating prognosis | Speaking prognosis | |||||||||
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| r | P | r | P | r | P | r | P | r | P | |||||
| All participants (n=54) | ||||||||||||||
| Age | −0.15 | 0.28 | −0.06 | 0.67 | 0.03 | 0.84 | −0.00 | 0.99 | −0.05 | 0.74 | ||||
| Male | 0.05 | 0.71 | 0.11 | 0.44 | −0.01 | 0.92 | 0.00 | 0.98 | 0.01 | 0.97 | ||||
| Gastrointestinal cancer | −0.24 | 0.09 | −0.26 | 0.059 | −0.14 | 0.30 | −0.19 | 0.16 | −0.30 | 0.03 | ||||
| Respiratory cancer | 0.18 | 0.19 | 0.28 | 0.041 | 0.17 | 0.22 | 0.26 | 0.057 | 0.32 | 0.02 | ||||
| Skin cancer | 0.11 | 0.41 | 0.02 | 0.89 | −0.01 | 0.95 | −0.07 | 0.64 | 0.03 | 0.80 | ||||
| Life-sustaining/palliative | 0.08 | 0.56 | 0.15 | 0.28 | 0.04 | 0.79 | 0.03 | 0.86 | 0.11 | 0.43 | ||||
| Cancer surgical history | −0.14 | 0.32 | −0.14 | 0.33 | −0.15 | 0.27 | −0.09 | 0.53 | −0.05 | 0.74 | ||||
| Cancer radiotherapy history | 0.20 | 0.15 | 0.07 | 0.62 | 0.01 | 0.93 | −0.04 | 0.79 | 0.04 | 0.80 | ||||
| Intravenous ± oral administration | −0.03 | 0.82 | −0.09 | 0.50 | −0.10 | 0.48 | −0.10 | 0.48 | −0.11 | 0.42 | ||||
| Living with family | 0.00 | 0.98 | 0.01 | 0.93 | 0.00 | 0.98 | 0.01 | 0.94 | 0.02 | 0.89 | ||||
| Older adults-only households† | 0.07 | 0.61 | 0.06 | 0.65 | 0.21 | 0.14 | 0.25 | 0.08 | 0.20 | 0.15 | ||||
| Occupation | 0.05 | 0.71 | −0.05 | 0.74 | −0.11 | 0.41 | −0.09 | 0.51 | −0.07 | 0.61 | ||||
| ECOG-PS ≥2 | 0.16 | 0.25 | 0.22 | 0.11 | 0.26 | 0.055 | 0.30 | 0.03 | 0.25 | 0.07 | ||||
| Life-sustaining/palliative only (n=36) | ||||||||||||||
| Age | 0.07 | 0.67 | 0.08 | 0.63 | 0.25 | 0.14 | 0.14 | 0.42 | 0.06 | 0.72 | ||||
| Male | −0.13 | 0.47 | 0.08 | 0.65 | 0.04 | 0.82 | −0.02 | 0.91 | 0.00 | 1.00 | ||||
| Gastrointestinal cancer | −0.20 | 0.24 | −0.22 | 0.19 | −0.08 | 0.63 | −0.21 | 0.23 | −0.30 | 0.08 | ||||
| Respiratory cancer | 0.19 | 0.27 | 0.28 | 0.098 | 0.14 | 0.41 | 0.27 | 0.12 | 0.32 | 0.054 | ||||
| Skin cancer | 0.04 | 0.80 | −0.05 | 0.76 | −0.07 | 0.67 | −0.07 | 0.70 | 0.00 | 1.00 | ||||
| Cancer surgical history | −0.15 | 0.38 | −0.09 | 0.62 | −0.20 | 0.25 | −0.10 | 0.55 | 0.04 | 0.82 | ||||
| Cancer radiotherapy history | 0.25 | 0.15 | 0.04 | 0.80 | 0.00 | 1.00 | −0.04 | 0.82 | 0.02 | 0.91 | ||||
| Intravenous ± oral administration | −0.16 | 0.35 | −0.34 | 0.045 | −0.31 | 0.07 | −0.28 | 0.098 | −0.34 | 0.044 | ||||
| Living with family | −0.28 | 0.101 | −0.26 | 0.12 | −0.26 | 0.13 | −0.25 | 0.14 | −0.23 | 0.17 | ||||
| Older adults-only households‡ | 0.26 | 0.13 | 0.11 | 0.54 | 0.40 | 0.02 | 0.38 | 0.03 | 0.29 | 0.09 | ||||
| Occupation | 0.04 | 0.82 | −0.04 | 0.81 | −0.15 | 0.38 | −0.13 | 0.44 | −0.07 | 0.69 | ||||
| ECOG-PS ≥2 | 0.20 | 0.25 | 0.25 | 0.14 | 0.32 | 0.061 | 0.37 | 0.03 | 0.30 | 0.07 | ||||
| Adjuvant only (n=18) | ||||||||||||||
| Age | −0.59 | 0.009 | −0.35 | 0.15 | −0.37 | 0.13 | −0.22 | 0.38 | −0.26 | 0.30 | ||||
| Male | 0.38 | 0.12 | 0.10 | 0.69 | −0.14 | 0.57 | 0.03 | 0.90 | −0.01 | 0.97 | ||||
| Gastrointestinal cancer | −0.26 | 0.29 | −0.32 | 0.19 | −0.28 | 0.27 | −0.13 | 0.60 | −0.28 | 0.27 | ||||
| Respiratory cancer | 0.10 | 0.68 | 0.32 | 0.20 | 0.28 | 0.26 | 0.26 | 0.30 | 0.29 | 0.24 | ||||
| Skin cancer | 0.24 | 0.33 | 0.11 | 0.68 | 0.09 | 0.73 | −0.09 | 0.73 | 0.07 | 0.78 | ||||
| Cancer surgical history§ | – | – | – | – | – | |||||||||
| Cancer radiotherapy history§ | – | – | – | – | – | |||||||||
| Intravenous ± oral administration | 0.19 | 0.45 | 0.27 | 0.28 | 0.35 | 0.15 | 0.29 | 0.24 | 0.34 | 0.17 | ||||
| Living with family | 0.38 | 0.12 | 0.41 | 0.09 | 0.41 | 0.09 | 0.40 | 0.10 | 0.38 | 0.12 | ||||
| Older adults-only households¶ | −0.31 | 0.23 | 0.03 | 0.92 | −0.21 | 0.43 | −0.04 | 0.88 | 0.04 | 0.88 | ||||
| Occupation | 0.13 | 0.60 | −0.06 | 0.83 | −0.03 | 0.90 | −0.02 | 0.93 | −0.05 | 0.83 | ||||
| ECOG-PS ≥2§ | – | – | – | – | – | |||||||||
†, all-older adult households (n=52); excludes two solo residents; ‡, all-older adult households (n=35); excludes one solo resident; §, no participants in the adjuvant group (n=18); ¶, all-older adult households (n=17); excludes one solo resident. ECOG-PS, Eastern Cooperative Oncology Group performance status.
Discussion
Key findings
There was a tendency among our patients to seek information about their functional prognoses to the same extent as about their life prognoses. These findings confirmed the conclusions of Hamano et al. (7). This trend remained consistent when the data were divided into adjuvant and life-sustaining/palliative groups, with no prognostic information reaching statistical significance in terms of the proportion of respondents who responded with “strongly agree”, “agree”, or “somewhat agree”. However, when focusing on the percentage “strongly agree” or “agree” responses, the percentage for life prognosis in the adjuvant group was almost the same as that of functional prognosis. The results also indicated that patients who wished to receive prognostic information tended to want information on all aspects—both life and functional—whereas those who preferred not to receive prognostic information generally did not wish to know any type of prognosis.
Strengths and limitations
Our study provides new insight into the prognostic information preferences of patients receiving chemotherapy for the first time, which can be applied to clinical practice. However, our study also has some limitations. Participants were recruited from only a single site, most participants had gastrointestinal and respiratory cancers, and more than half were aged 65 years or older. This may have caused a selection bias and may not reflect an adequate population profile. Only one patient from the adolescent and young adult generation (under 39 years of age) was included. It is possible that the preferences of younger patients regarding prognostic information may differ from these results. Understanding this would be useful and represents a future challenge. Furthermore, the sample size was relatively small (n=54) and may have lacked statistical power, especially in subgroup analyses (n=18). Therefore, even for items showing statistically significant correlations, we cannot rule out the possibility that these results are unstable and influenced by sample variability. Consequently, the results of the subgroup analyses in this study are exploratory. Moreover, when interpreting the results of this study, it is necessary to consider the cultural context unique to Japan. Traditionally in Japan, ‘family wishes’ and ‘psychological consideration for the patient’ tend to take precedence over ‘truth-telling’, and physicians may not explicitly communicate detailed prognosis information (16). This family-centered decision-making model and the culture of entrusting judgment to physicians (17) may have influenced preferences for prognostic information. Therefore, caution is warranted in directly generalizing these findings to Western healthcare systems, which strongly emphasize individual autonomy and detailed information disclosure. However, the preferences for prognostic information identified in this study are considered to offer important implications for other countries as well.
Comparison with similar research
Newly diagnosed cancer patients place the most importance on information about prognosis and cure potential, and less importance on information about function (impact on long-term functioning, one’s ability to carry out usual activities) and QOL (18). These results suggest that not only functional prognosis but also life prognosis is important for patients receiving cancer chemotherapy. In addition, the results suggest that functional prognosis is sought after for life-sustaining/palliative purposes, whereas both life and functional prognoses tend to be sought for adjuvant purposes. Among patients receiving chemotherapy for life-sustaining/palliative, maintaining their ability to live as themselves appears to be more important than the duration of survival itself. Therefore, healthcare providers need to actively support patients who wish to know prognostic information about life and functional prognoses. Conversely, for patients who indicate that they do not wish to know prognostic information, it is necessary to confirm the patient’s wishes on a case-by-case basis regarding any prognostic information and provide informational support in accordance with the patient’s wishes.
When the proportions of “strongly agree” and “agree” responses were compared with those reported by Hamano et al. (7) in a similar cohort of Japanese patients with cancer, no significant differences were observed among all participants. Furthermore, when restricted to the life-sustaining/palliative group, a significant difference was found in the life prognosis. Some reports indicate that survival is equally important for patients receiving palliative (advanced stage) and those receiving adjuvant (early stage), regardless of QOL (19) and, patients with advanced cancer have excessive expectations or thoughts about cancer chemotherapy (i.e., the belief that cancer chemotherapy will cure or prolong life), regardless of their education level or current physical condition (20). These results suggest that many patients with cancer who are about to undergo chemotherapy wish to know their life prognoses. We believe this might be because such patients have strong expectations that treatment will prolong survival and prevent relapse, accompanied by a correspondingly strong desire to understand their life expectancy. In addition, this tendency was even stronger among patients receiving life-sustaining/palliative care. When considered alongside the results presented in Table 2, patients receiving chemotherapy for life-sustaining/palliative purposes were more likely than those receiving it for adjuvant purposes to wish to know their life prognoses, and even more likely to seek information about their functional prognoses in order to live as fully as possible.
Anxiety about AEs and information-seeking behavior were not significantly different from the desire to obtain prognostic information. Conversely, only knowledge of cancer chemotherapy was significantly different from knowledge of eating prognosis. In other words, those with knowledge about cancer chemotherapy responded that they did not want to know their eating prognoses. Nausea and vomiting are the most common side effects of cancer chemotherapy (19). These results are likely strongly influenced by the general image of cancer chemotherapy, and it is thought that participants answered based on the expectations of their diet during the treatment period rather than their long-term dietary outlook.
Explanations of findings
The frequency and timing of information-seeking vary depending on the stage of the disease (21). At a significance level of 10%, a difference was found between life prognoses and information-seeking behaviors. This trend was more pronounced in the life-sustaining/palliative group, where the relationship was significant, whereas in the adjuvant group, the relationship was not significant. In other words, many patients receiving life-sustaining/palliative care wanted to know their prognoses and searched for information thereon. Patients with metastatic breast cancer express hope for a cure through chemotherapy, even while being aware that their disease is incurable (22). In this cohort, this is thought to reflect expectations and concerns regarding the life-prolonging effects of cancer chemotherapy in patients receiving life-sustaining/palliative care. However, the analysis did not examine differences based on the type of information sought (e.g., treatment efficacy or prognosis), the reliability of the information source, or the depth of the search. This indicates the presence or absence of an active approach; future research should examine the impact of information quality and source type.
Our results show that cancer type and ECOG-PS ≥2 influence prognostic information. Information needs vary by cancer type and sometimes evolve as patients move through different stages of their cancer care continuum (23,24). Furthermore, patients with gastrointestinal cancer tend not to want to know about their life and functional prognoses, whereas patients with respiratory cancer are more likely to seek such information. Different cancer types have different characteristics regarding the desire for prognostic information. Furthermore, in the adjuvant group, surgical intervention (e.g., gastrectomy or lung resection) is thought to influence preferences for functional prognosis (eating and speaking prognosis), but our results did not reveal a significant correlation. Possible reasons for this include the fact that the question was asked in a future format, focusing on “how long I can do this”, and the small sample size. Further investigation is warranted. In ECOG-PS, participants with scores of ≥2 were not in the adjuvant group, so the discussion focused on the life-sustaining/palliative group. In patients receiving life-sustaining/palliative care, poor ECOG-PS was associated with a desire to know the functional prognosis, with significant correlations, especially for eating prognosis. In this patient population, poor ECOG-PS may be a factor in seeking more prognostic information.
In the life-sustaining/palliative group, the presence or absence of intravenous anticancer drugs was hypothesized to correlate with prognostic information. A previous study of breast cancer patients conducted in Japan reported that intravenous administration was perceived as more effective than oral administration (25). In other words, the perception that intravenous anticancer drugs represent a more potent form of treatment may lead patients to believe that their disease is more severe and, consequently, to avoid receiving prognostic information. In addition, being in an older adults-only household significantly correlated with the desire for prognostic information, particularly regarding thinking and eating habits. While living with one’s family provides significant support to patients with cancer in many ways, it also places a heavy burden on family members. Additionally, the burden on partners is greater in older adults-only households, which may explain the stronger desire for information on functional prognosis. We predicted that this tendency would be observed only in the life-sustaining/palliative group, as they were more aware of approaching the end of life.
In the adjuvant group, a moderate negative correlation was observed between age and prognosis. Patients receiving adjuvant therapy tend to have higher expectations for cure or life-prolonging effects from treatment than patients receiving life-prolonging/palliative care (26). However, older patients with cancer tend to view “living peacefully and being themselves” as their treatment goal rather than prolonging their life (27,28). The tendency toward lower perceived prognosis among older age groups may reflect differing treatment values associated with aging, where maintaining physical and cognitive function is prioritized over prolonging survival. However, as this study is cross-sectional, determining whether this reflects a change over time with aging or differences in values between generations (cohort effect) requires future longitudinal verification.
In this study, only two patients lived alone (one in the recurrence/palliative group and one in the adjuvant group); therefore, it was not possible to sufficiently examine whether living with a family was related to the desire for prognostic information. In a previous study by Hamano et al. (7), no correlation was found between living with family and the desire for prognostic information. However, based on the results showing a correlation between desire for prognostic information and older adults-only households in the life-sustaining/palliation group, a correlation between living with family and desire for prognostic information might be found within a more limited scope.
Implications and actions needed
The desire for prognostic information varies depending on the patient’s situation. Among patients with advanced cancer, the proportion of those who do not want to know about their life prognosis is significantly higher among those receiving third-line or higher treatment than among those receiving cancer chemotherapy for the first time (29). Hence, because there is always a desire for functional and life prognoses, healthcare professionals need to provide informational support, taking this into account. Based on the findings of this study, we present specific practical recommendations for individualized information support in clinical settings. Information support regarding functional prognosis is extremely important for cancer patients. However, in clinical practice, it is important to be aware that the information that is considered important changes depending on the stage of treatment a cancer patient is at. For patients undergoing cancer chemotherapy, information on life prognosis is equally important, so providing information support that combines functional and life prognosis is important. While there is no need to significantly differentiate approaches to information support depending on the treatment objectives of cancer chemotherapy, it is important to note that patients receiving life-sustaining/palliative tend to have a stronger desire for information about vital prognosis.
Furthermore, based on our experience conducting this study, we believe that, with regard to preferences regarding prognosis information, using the Ask-Tell-Ask method (30), which asks, “What kind of information would you like to know about your current condition, and to what extent?” to align the patient’s perception of prognosis with that of the healthcare provider is a good way to implement individualized information support. Above all, healthcare providers are required to provide patients with sufficient prognostic information to make appropriate decisions (31).
Furthermore, although it is difficult to comment on the timing of the evaluation because this study only conducted evaluation at one point in time, we believe that the time at the end of one course of chemotherapy is the time when patients first experience the reality of treatment (side effects and changes in physical function), and this is one of the best times to evaluate “information preferences (how much detail they want to know)”.
Conclusions
We identified the preferences for prognostic information among Japanese patients with cancer receiving chemotherapy for the first time. Consistent with previous research, the desire to determine functional prognosis was confirmed. However, in contrast to the findings of a previous study, patients still strongly desired to know their life prognoses, although functional prognostic information was also important. This was considered to reflect patients’ strong desire for chemotherapy to prolong life or prevent relapse. Considering cancer patients’ prognostic information needs and responding to them from a broad perspective may ultimately lead to improved psychosocial well-being (6,8,32).
Acknowledgments
The authors are grateful to all the participants as well as the medical staff who contributed greatly to this study.
Footnote
Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-145/rc
Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-145/dss
Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-145/prf
Funding: None.
Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2025-1-145/coif). The authors have no conflicts of interest to declare.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the Institutional Review Board of Shizuoka Cancer Center (No. T2022-16) and informed consent was obtained from all individual participants.
Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.
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