Patients diagnosed with cancer are expected to choose one or more treatment methods after receiving explanations of the treatment options. Cancer treatment involves multiple phases, depending on the type and stage of the cancer, disease progression, and the patient’s condition. A patient is, thus, faced with the decision-making process at each phase. When making these choices, patients consider not only treatment effects but also aspects of quality of life; these concerns can cause confusion and conflict with the often-complicated information provided by medical caregivers.

Shared decision-making (SDM) occurs when healthcare professionals provide support in this decision-making process. The concept of SDM has been used frequently since the 1990s and is considered among the main methodologies for supporting active decision-making, backed by advanced communication skills. SDM has been found to maximize patient health outcomes (1), strengthen patient empowerment and responsibility by ensuring that the chosen treatment plan is based on patient preferences (2-4), and increase patients’ understanding of any acquired knowledge (5). In addition, SDM allows patients to experience a sense of control and confidence (6,7) and helps maintain and strengthen their independence and empowerment, resulting in improved psychosocial adaptive capacity (3,7,8) and improved adherence to medical care (1,3,4,6,8). In a Dutch study on SDM, it was found that physicians and patients did not discuss the short- and long-term effects of treatment in 22% and 26% of the cases, respectively (9). Furthermore, a significant financial burden is associated with inadequate SDM among adolescent and young adult cancer survivors (10). In a previous study, it was found that when SDM was practiced, older patients were more active in decision-making and more satisfied with their treatment than younger patients (11). Moreover, both patients and clinicians prefer adopting a collaborative role in treatment decisions. In previous studies of patients with early-stage cancer, most patients stated that they did not remember having to choose a treatment modality and experienced little or no decision-making conflict (12), preferred playing an active or cooperative role with their caregivers in treatment decision-making, and found it important to discuss and share their opinions/decisions with their caregivers (13). Thus, to provide effective decision support, it is necessary to understand the factors that influence the patient’s decision-making process. This study aimed to identify the cancer treatment perceptions of patients with cancer and the decision-making factors that affect their treatment choices.

Study design. This was an observational (cross-sectional) study. The selection criteria were as follows: diagnosis with cancer (any type) in the past 10 years and age of 18-69 years. Patients were excluded if they had never received any formal cancer treatment. The study was conducted in October 2019.

Recruitment of participants. Patients with cancer and treatment experience were recruited from an existing online research company panel. There were no geographic or ethnic restrictions, but participants had to be able to respond in Japanese. A request to participate in the self-administered, online survey was sent to patients with cancer registered with Rakuten Insight Inc. (https://insight.rakuten.co.jp/en/, accessed September 9, 2023) and who met the selection criteria. Sampling continued until 200 patients were enrolled.

Questionnaire survey. The survey was designed to clarify factors involved in determining treatment options for patients with cancer. The survey items included basic patient information (age, sex, treatment details, quality of life, length of time until treatment decision, etc.), perceptions of the explanations patients had received from healthcare professionals, views of their cancer treatment, and reasons for deciding on certain treatment methods.

Data analysis. All analyses were conducted using the IBM SPSS Statistics for Windows, version 26 (IBM Corp., Armonk, NY, USA). Means, ratios, frequencies, and percentages were calculated for patient demographics, characteristics of the cancers, and patients’ perceptions of their disease and their treatment options. Content analysis was conducted to determine the important considerations in treatment selection. Factor and cluster analyses were conducted to determine attitudes toward the actual treatments. The principal factor method was used to extract factors, while factor rotation was conducted using the varimax method with Kaiser’s normalization. Lastly, the k-means (no update option) procedure, a component of the cluster analysis method, was conducted with the following criteria: cluster (3), mixture (10), and converge (0).

Ethical considerations. Potential participants were sent a written request for participation, an explanation of the purpose and methods of the study; information about the confidentiality of their data, the stringent protocols of data storage and disposal of personal information, and the voluntary nature of participation; and an agreement form to obtain consent for publishing their information. Data were collected anonymously using serial IDs. The study was approved by the Osaka University Graduate School of Human Sciences Research Ethics Committee (approval number: 19037). The planning, conduct, and reporting of human research were in accordance with the Helsinki Declaration as revised in 2013.

Sample characteristics. Valid responses were obtained from 194 patients [97%; 109 men (56.2%) and 85 women (43.8%)]. Twenty patients (10.3%) were currently undergoing treatment, and 158 (81.4%) had maintained an acceptable quality of life. Thirty-six patients (18.6%) had experienced cancer recurrence, 29 (14.9%) had metastasized disease, and 112 (57.7%) were not currently undergoing treatment for cancer but were receiving regular follow-up. Lastly, 158 (81.4%) were currently symptom-free and reported no limitations in social activities, such as professional work or housework (Table I).

Perceptions of patients with cancer. Perceptions regarding explanations provided by healthcare professionals. Among the respondents, 77.8% (n=151) were aware of the explanations given by their doctor and other healthcare professionals regarding their disease status. However, few patients were aware that treatment was intended to prolong their life rather than actually cure the disease [33.5% (n=65)], understood the concept of palliative care [20.1% (n=39)], or had a clear perspective on their prognosis [39.2% (n=76)] (Figure 1).

Perceptions regarding cancer treatment. The patients expressed the following concerns about undergoing treatment: major financial and family burdens [60.3% (n=117)], physical pain [47.4% (n=92)], and increased stress [40.2% (n=78)] (Figure 2).

Quality of decision-making related to cancer treatment. Among the patients, 95.9% (n=186) made their treatment choice within 1 week of receiving an explanation of their treatment options from their doctors. Nearly half of the patients (49.0%; n=95) reported difficulty in making a decision, although 83.0% (n=161) reported that they were able to make the treatment choices themselves.

When deciding on a treatment method, 1) prolonging life [68.0% (n=132)], 2) opinion of the medical staff [68.6% (n=133)], and 3) risks associated with treatment [60.3% (n=117)] were the most important selection criteria (Figure 3). The patients prioritized minimizing the impact on family, living for as long as possible, maintaining time spent with family, and avoiding pain. From the patients’ perspectives, their families valued prolonging the patient’s life, respecting the patient’s wishes, minimizing suffering, and supporting the patient to the extent that the family could maintain their own lives (Table II).

Stratification based on perceptions of cancer treatment. Based on the responses concerning perceptions of current (10 items, Figure 2) and future treatment (10 items), four main themes were detected on factor analysis: Factor 1, “maintenance of the quality of life through cancer treatment-related systems”; factor 2, “expectations regarding cancer treatment itself”; factor 3, “adverse effects of cancer treatment on daily life” and factor 4, “psychological anxiety about cancer treatment” (Table III). Based on the similarity of their benefits, factors 1 and 2 were summarized as positive expectations regarding cancer treatment and care, while factors 3 and 4 were summarized as anxiety-provoking aspects related to the burden and side effects of treatment. Patients who experienced difficulty in selecting their treatment tended to have low awareness of factor 1 and high awareness of factor 4.

Non-hierarchical clustering analysis was conducted with the factors arranged in three clusters: Cluster 1, “those anxious about cancer treatment”; cluster 2, “those who expect a therapeutic effect” and cluster 3, “those who expect support and care”. Patients in cluster 1 had higher rates of recurrence and difficulty in selecting treatment methods. Patients in cluster 2 experienced symptoms at higher rates, and those in cluster 3 actively collected information and handled the situation independently at higher rates than those in the other clusters (Table IV).

Our survey results showed that the respondents tended to have low awareness of the following aspects of cancer treatment: the intent of prolonging life rather than curing the disease, the role of palliative care, and treatment prognosis. This finding is in line with the results reported by Shay et al. (14), namely that “in open-ended responses, the most commonly reported concerns related to medical decision-making are feelings of uncertainty and fear of receiving bad news”. Therefore, the patients may not have attempted to gain awareness of their treatment plans as a psychological response to the fear of uncertainty and bad news. Furthermore, many patients receiving palliative treatment expect the treatment to cure their disease, and explanations from medical personnel are not always easy to understand (15). These observations suggest that prognosis should be thoroughly discussed with patients receiving palliative treatment.

Regarding physical pain, when it became difficult to continue standard treatment, 56% (1st line), 64% (2nd line), and 59% (3rd line) of respondents were willing to try another treatment despite the risk of severe side effects (16). Thus, the inability of patients to accurately assess the likelihood of side effects can result in the treatment choices being misunderstood by them. Therefore, in decision-making support, it is necessary to assist patients in visualizing the side effects. Physicians involved in cancer treatment consider minor surgical complications of grade 1-2 as acceptable (17), and a survey on patient satisfaction with surgical treatment in patients with musculoskeletal sarcoma showed that priority 1 was tumor removal, followed by functional preservation as a factor that increased satisfaction (18). Therefore, healthcare professionals and patients must discuss the physical pain associated with treatment and its impact on quality of life well in advance. Furthermore, if perceptions of cancer treatment among patients with cancer differ from those predicted by healthcare professionals, their decision-making in treatment selection may be distorted. Therefore, it is important to confirm the perception of treatment and correct the course of treatment before its initiation.

The aspect of increased stress can be attributed to feelings of dependence on the physician for treatment. In their study of prostate cancer survivors, Shen et al. (19) found that “compared to the initial diagnosis, survivors with rising levels of prostate-specific antigen (PSA) reported increased negative affect following their diagnosis, concern about the treatability of their disease, increased planning and health behavior change, heightened levels of worry preceding doctor’s appointments (especially prior to the discussion of PSA testing results), and a strong reliance on physicians’ treatment recommendations” (19). This is an important point for clinicians when providing support for SDM – when autonomous decision-making is inhibited by temporary anxiety or concern, it is necessary to prioritize psychological care to improve readiness for decision-making.

We found that 1) the desire to prolong life (68.0%), 2) the opinion of the medical staff (68.6%), and 3) acceptance of risks associated with treatment (60.3%) were the main decisive factors involved in treatment selection. While it is important to prioritize survival in the decision to undergo a given treatment, as illustrated by the results of a previous study – “Priority for survival substantially motivated BA/BC men to take up radical treatment for prostate cancer” (20) – adverse events and risks associated with treatment and their impact on life need to be properly recognized and discussed prior to the commencement of the treatment.

Regarding attitudes toward cancer treatment, 1) “patients who were anxious about cancer treatment” had higher rates of recurrence and difficulty in choosing treatment, 2) “patients who expected to benefit from treatment” had higher rates of “any symptoms”, and 3) “patients who expected support and care” showed higher rates of “active information gathering” and “proactive responses.” This may be an important clue to guide support based on the patient’s condition. For example, in case 1), it may be necessary to alleviate anxiety about treatment, symptom management can be prioritized for case 2), and the need for support and care can be identified and addressed in case 3).

Regarding information gathering in this context, we found that self-initiated information seekers tended to be female, had high levels of education and good information retrieval skills, and engaged in communication with their healthcare providers (21). Therefore, even if healthcare professionals actively provide information to patients who seek it on their own, it is less likely to cause information overload and confusion. However, when providing information to patients who do not seek it on their own, healthcare providers must carefully consider the amount of information provided and the timing of information provision. The limitation of this study was that the diversity of cancer types prevented a detailed analysis of type-specific differences in treatment decision-making methods.

Patients with advanced cancer may have less awareness and understanding of treatment and palliative care than those with early-stage cancer, so healthcare providers need to design explanations that are appropriate for their level of understanding. The “inability to visualize the physical condition after treatment” and “anxiety about life” are factors that influence these patients’ ability to actively make autonomous decisions. Therefore, when providing information on treatment, nurses and doctors should support patients in resolving their concerns by encouraging them to visualize their lives after treatment.

Finally, patients who reported anxiety about cancer treatment were more likely to have experienced cancer recurrence or metastasis and were more anxious about recurrence than about the effectiveness of treatment. This finding is characteristic of patients with advanced cancer; in such cases, the anxiety must be addressed rather than focusing on providing information for SDM.

The results of this study suggest that factors involved in cancer treatment decision-making are better understood when classified according to cancer stage, type, and treatment method. Decision support should also include helping patients to visualize the changes that will occur in their bodies both from the disease and from side effects of treatment and to fully discuss possible gaps between expectations and reality based on prognosis and the progression of disease. Further, our results suggest that care to alleviate anxiety to improve readiness for decision-making should be a priority and that attention should be given to the amount and timing of information provided to patients who do not ask for it on their own, in addition for their reasons for not doing so. Further exploration is needed on factors involved in decision-making, and how these factors may differ across populations, cancer stages, types, and treatment methods.

The Authors declare no conflicts of interest.

Y.K., K.H., A.U., M.N., and Y.K.: Conceptualization; data curation; formal analysis; funding acquisition; project administration; Y.K., K.H.: investigation; methodology; resources; software; A.U., Y.K.: supervision; validation; visualization; Y.K.: roles/writing – original draft; Y.K., K.H., A.U., M.N., and Y.K: writing – review & editing.

We thank those who responded to our survey.

This research was supported by JSPS KAKENHI (grant number: 18H03084).