Development of the Japanese version of an information aid to provide accurate information on prognosis to patients with advanced non–small-cell lung cancer receiving chemotherapy: a pilot study

Lung cancer is the most common cause of cancer-related death in males [1]. Approximately 85% of cancerous tumors are histological subtypes of non–small-cell lung cancer (NSCLC), and 50% of patients with NSCLC are treated with palliative chemotherapy [2]. In recent years, therapies have been developed to target aberrant oncogenic pathways. Epidermal growth factor receptor (EGFR) inhibitors have been shown to improve median overall survival; and survival for patients treated with gefitinib, platinum, and pemetrexed or docetaxel is around 3 years [3]. However, in NSCLC, the overall frequency of EGFR mutations is only around 30% [4]. Platinum-based chemotherapy may provide an improved quality of life with an absolute increase of approximately 1.5 months in median survival [5].

Without explicit prognostic information, patients may overestimate their life expectancy and make poor choices at the end of life [6, 7]. Truth-telling about life expectancy, which reflects modern Anglo-American values, is considered a requirement for patients’ self-determination [8]. This suggests the presence of major cross-cultural differences in truth-telling attitudes and practices [9]. Japan had had a long-standing tradition of paternalism with regard to patient-physician encounter in the decision-making process [10]. However, since the 2000s, informed consent and truth-telling attitudes have evolved in many countries where self-determination had been synonymous with isolation [9].

In practice, oncologists in the United States are often reluctant to give people poor prognostic information [11] and tend to avoid such discussions for fear of diminishing patient hope [12]. According to one model in the context of potential illness, hope is defined through two related spheres: a particular type of hope with expectations of a particular outcome, and a generalized type of hope that implies an absolute trust in the future without any specific predetermined goals [13]. In some cases, particular hopes such as an expectation of symptom alleviation resulting from chemotherapy appear unrealistic and misguided, leading patients to overestimate their life expectancy and to have a continuing belief that they will be cured.

One strategy to promote patient understanding and facilitate decision-making is the use of an information aid (IA). In the context of an IA, the discussion about life expectancy is one of the most important parts; however, it remains unclear whether numerical data or qualitative words are preferable in such discussions [14, 15]. The balance between truth-telling and maintaining hope is a delicate one [13]. To further investigate this issue and determine if patients would accept information on life expectancy in the form of numerical data, we designed a Japanese version of an IA for patients with metastatic NSCLC. We then assessed the number of patients who opt for full disclosure of life expectancy when using the IA, and the pre- and post-intervention effects of the IA on psychosocial disorder, hope, and perception of prognosis and treatment goals.

The most successful IAs available for metastatic, incurable diseases effectively promote or sustain the hope of patients. Our findings suggest that IAs that provide prognostic information with explicit numerical data can sustain generalized hope in patients with advanced cancer without increasing their anxiety. Similarly, Smith et al. [23] reported that hope can be maintained in patients with advanced cancer when they are given truthful prognoses and treatment information. In a study involving 126 women with platinum-resistant ovarian cancer [24], generalized hope, but not particular hopes such as an expectation of symptom alleviation resulting from chemotherapy, was negatively correlated with anxiety and depression. Therefore, rather than avoiding discussions regarding life expectancy, oncologists should aim to provide information that is realistic, but also conveys hope. In the present study, the tendency in the DT scores after the discussion about life expectancy may be explained as chemotherapy providing a helpful role in the ability of some patients to adjust psychologically to their prognosis, or that the IA is an acceptable and highly informative tool.

Because a majority of patients seem to prefer to be left at least partially ignorant about life expectancy [14, 25], the importance of determining patients’ preferences before discussing prognoses should be emphasized [26, 27]. This preference demonstrates major cross-cultural differences; people in non-Anglo Saxon countries are less likely than Anglo Saxon countries to believe that a patient should be told about a terminal prognosis [28]. In Anglo Saxon countries, this knowledge is considered necessary for patients’ self-determination. Therefore, in Japan, where patients’ self-determination is more synonymous with isolation, it is speculated that truth-telling in discussions regarding prognosis should be avoided. To the best of our knowledge, this pilot study is the first attempt to develop and test an IA for patients with metastatic NSCLC in Japan. We found that 20 of 21 patients accepted prognostic information in the form of numerical data and were able to complete the IA test and interviews. The reason behind this high completion rate was thought to be the growing importance of informed consent, public knowledge about the nature of and treatments for cancer, and patient and public activism, regardless of cross-cultural differences. In this study, information about life expectancy was explained as follows [see Additional file 1]: “The numbers provided here refer to the outcomes of an average patient with this disease in this situation. Half of patients will perform better than this number and half will perform worse. Remember, you are not a statistic and therefore will not always match this number. Each person has different factors that may affect their response.” These statements seem to have resulted in the high rate of acceptance among patients regarding life expectancy. Another possible reason for the high completion of intervention using the IA is interviewer bias. It has been reported that physician and patient seem to mutually reinforce attitudes of not giving up on treatment in order to maintain patient hope [29]. Thus, our patients may have been eager to participate in our interviews as it touched upon starting chemotherapy.

Whether numerical data or qualitative words are preferable when discussing life expectancy with patients with incurable cancer remains unclear. Kaplowitz et al. [30] reported that less than half of the patients in their study wanted a quantitative estimate of survival. Meanwhile, Hagerty et al. [14] reported that a majority of the patients wanted detailed prognostic information. Recently, Kiely et al. [31] reported that providing numerical estimates for average, best-, and worst-case life expectancy scenarios would be reassuring and conveys hope to patients. Our findings were consistent with those of Kiely et al. However, because changes in a disease may alter a patient’s preferences for information about prognosis and treatment [32], hope among patients receiving second-line chemotherapy or beyond requires further investigation.

Even when presented with accurate information on prognosis and the goals of cancer treatment, patients with advanced cancer frequently retain inaccurate perceptions about their illness. A major reason for this prognostic misunderstanding is collusion between patients and their physicians involving quick transitions by both parties from discussions regarding prognosis to those regarding treatment options and schedules; this collusion misdirects attention and can lead to false optimism [22]. In order to avoid this situation, we provided explicit prognostic descriptions to patients while using the IA. However, we still found that 80% of the patients provided survey responses that indicated inaccurate expectations about the curative potential of chemotherapy. It is unclear whether this represents collusion, a misunderstanding of the IA, or misunderstanding of the question asked. The rate of these inaccurate responses was higher than those reported by Weeks et al. [22], and was consistent with a report by Leighl et al. [33] that used a treatment decision aid. Moreover, despite having terminal NSCLC, 32% of the patients in the study by Temel et al. [34] reported that their cancer was curable, and 69% expressed the idea that the goal of chemotherapy was to eliminate the cancer entirely. We guess that such conflicting views may be due to confusion about the nature of the chemotherapy, in which patients understand that their cancer is incurable, but nonetheless hope that curative therapy could be developed in the near future, or even that a miracle could occur.

Early palliative care has improved quality of life, mood, and survival in patients with metastatic NSCLC based on results from a randomized trial [35]. A qualitative analysis of that trial emphasized that palliative care clinicians focus on determining a patient’s individual needs and preferences for prognostic information in the early stages of the illness, and these palliative care clinicians play a distinct yet complementary role that enables oncologists to focus on cancer treatment and manage medical complications later in the trajectory of the disease [36]. The present study showed that only 15% of the patients demonstrated an accurate understanding of their illness; and no improvements in this understanding were seen 3 weeks after the intervention by palliative care teams. This suggests that palliative care teams could not effectively establish relationships with patients due to the traditional paternalistic relationship between patients and their physicians. Results from a recent trial suggest that a combination of explicit prognostic information and reassurance about non-abandonment might provide realistic hope that improved understanding can still be achieved [37]. This method is available for oncologists in Japan via a system in which attending physicians treat patients with powerful emotional expressions throughout the course of their disease. However, further research is needed to explore the complementary roles of palliative care teams and oncologists in Japan.

This study has several limitations. First, the evaluations were at a single center and comprised a small sample size. These findings need to be interpreted with caution. However, data regarding hope and anxiety was similar to past studies [23, 33]. Second, we did not examine longitudinal changes in psychological distress and hope. As it has been reported that longitudinal changes in depression symptoms are associated with increased mortality [38], the IA should be tested at the time of diagnosis and at the time of disease progression after first-line chemotherapy. Third, because the present study did not design trajectories of perception of prognosis and treatment goals before and after interviews, we could not evaluate this aspect. However, there have been reports that many patients hold inaccurate perceptions about their prognosis over time even with the provision of adequate information. Fourth, the IA lacked information regarding the sustained long survival achieved through the use of immune checkpoint inhibitors [39]. Development of a future IA with that new survival information is necessary, and it should be examined in a larger sample.

The Japanese version of an IA appeared to help patients with NSCLC maintain hope, and did not increase their anxiety when they were given explicit prognostic information; however, the IA did not appear to help such patients understand the goal of chemotherapy. Further research is needed to test the findings in a larger sample and measure the outcomes of explicit prognostic information on hope, psychological status, and perception of curability.