To the best of our knowledge, this study is the first to qualitatively investigate the content of preferred communication with AYA patients regarding bad news about cancer. We identified 80 attributes that we classified into five domains: “Supportive setting,” “Method of disclosure of bad news,” “Information given,” “Emotional support,” and “Support for the patient’s decision-making.”
The most important discovery in this study was the identification of attributes that were not previously identified as the preferred communication with adult patients with cancer. Some of the new attributes classified into “Supportive setting” and “Method of disclosure of bad news” were related to patient age, such as “Not dealing with them as a child,” “Not making them feel there is a distance or wall between the physician and the patient,” and “Using words considering the patient’s developmental stage.” It was interesting that there was no obvious difference in the trends between adolescent (A) and young adult (YA) participants; there were adolescent patients who preferred “Not dealing with them as a child” and patients over 25 years of age who preferred “Not making them feel there is a distance or wall between the physician and the patient” and vice versa. Young adults often see themselves as “in-between,” moving toward independence but still closely tied to their parents . As the extent of independence varies widely among persons approximately 20 years old, decisions on how to behave and interact with patients should not be exclusively based on their age; instead, there is a need to individually assess each patient’s preference.
We also extracted new age-specific attributes classified into “Information given,” including “Discussing fertility preservation,” “Discussing the late effect of treatment,” and “Discussing factors related to school.” There are many physical and social impacts related to treatment on a patient’s life that are specific to AYA patients. [20, 21]. It is important to explain these influences in addition to the treatment itself. Further, it is notable that the new attribute “Describing the risk of not receiving anticancer treatment” was extracted. One participant remarked that “Physicians must emphasize the risk of not receiving anticancer treatment. If not, I may have refused the difficult treatment.” This attribute is important because adult patients’ cognitive development is innate when it comes to assessing short-term pros versus serious future cons. However, an adolescent’s ability to judge long-term harm, as opposed to short-term harm, may not be fully developed . Physicians should understand this cognitive trend of AYA patients, especially adolescents, and explain not only treatment necessity and risk but also the long-term risks or consequences of not receiving the treatment.
Moreover, among attributes of the “Emotional support” domain, the new attributes “Not showing empathy excessively” and “Not forcing exploration of the patient’s feelings” were noteworthy and differ from those found in previous studies. For adult patients with cancer, the importance of empathy and compassion has been emphasized. [23, 24]. In contrast, many participants in our cohort remarked “I don’t expect physicians to show compassion to me because they cannot understand my distress. The physicians should concentrate on explaining the disease and treatment. Instead, I’d like to share my distress with other AYA patients.” In previous studies, similar  or higher  rates of depression were reported in AYA patients than in older adults. It was also reported that more than 40% of AYA patients have high distress at the time of diagnosis , indicating that the psychological distress of AYA patients does not decrease after the disclosure of bad news. Nevertheless, this study showed a preference among AYA patients not to seek excessive empathy from physicians. AYAs tend to compare themselves and others to seek their identity, and importantly, to find their identity, they use social comparisons more than other generations . Previous studies have reported that upward comparisons (i.e., comparison with a superior person) trigger the deterioration of self-esteem and mental health. [29, 30]. Similarly, social comparisons with healthy people including physicians can bring negative emotions to AYA patients, with such emotions possibly resulting in the refusal or rejection of a physician’s empathy. The experience of AYA patients is highly specific. Therefore, physicians should be careful when they show an empathic reaction and explore the patient’s emotions. However, this context does not mean an avoidance of these actions or a recommendation not to show empathy to AYA patients.
In addition, “Support for the patient’s decision-making” was extracted as a new domain for AYA patients. Importantly, this result shows that decision-making is a high-interest topic for AYA patients with cancer; furthermore, physicians must consider the decisions that will be made based on the content of bad news about cancer when they communicate it. In the present study, we also found that there were different opinions about the presence of family members at the time of disclosure of bad news. In a study that clarified the preference of Japanese adult patients for bad news , they found that many wanted their family members to be present when given bad news. In contrast, our findings indicated that younger patients do not necessarily desire family-centered decision-making, which is considered an inherent characteristic of decision-making in Japan. Decision-making of AYA patients, especially adolescents, remains controversial in Japan because of legal limitations and family relations to authority in Japan . However, according to the results of this study, Japanese physicians should be more proactive in considering AYA patient-centered decision-making when giving bad news. Furthermore, among the participants in this survey, both “Making the patient decide the treatment by his/herself” and “Showing the physician’s recommendation” were extracted. These attributes demonstrate the importance of asking the patient regarding their preferred decision-making style. In addition, many patients expressed the preference that physicians should be sensitive to the feelings of family members during and after giving bad news. This finding is similar to the national characteristic of Japanese patients reported previously  and further shows the importance of family care in Japan being important not only for older adults but also AYA patients. In this study, most patients mentioned concern for their parents, but for married patients, partners and children may also be included. This point needs clarification in future research.
Finally, it is important to highlight that more than half of the attributes extracted in this study were identical to those in a previous study on the preferred style of communication with adult patients . Although some results specific to AYA patients were identified that should be considered by physicians, the basic attitude and communication are common among different generations. This result means that physicians do not have to be excessively anxious with AYA patients, but they should be mindful.
4.1 Study limitations
This study has a few limitations. First, the number of participants was modest and half of them were recruited using convenience sampling. The study was conducted to extract the preferred style of communication of AYA patients considering various factors such as the hospital they were treated at and their age. These different backgrounds contributed to the variety of the categories extracted. However, the sample size and recruiting method may have introduced bias as the literature on adult oncology has shown that the value of medical communication differs widely among individuals . To clarify the preferences of most AYA patients, further quantitative research with larger sample sizes based not only on the result of this survey but also on previous studies among adult settings is necessary. Second, most of the participants in our cohort had sarcoma, so they did not reflect all types of cancer, and some patients had partners or children. Family status affects a patient’s communication preferences. Therefore, a survey assessing patients’ wider background and examining how their background affects their communication preferences is warranted. Third, this study was based on a qualitative analysis of information obtained from in-depth interviews. Although careful attention was given to the trustworthiness and integrity of those involved, there can be errors in coding and analysis. To ensure reliability and objectivity, we implemented a three-step analysis and incorporated multiple viewpoints, including those of survivors. However, we cannot eliminate the possibility that the analysis was arbitrary. To address this limitation, a quantitative study should be conducted and multivariate analysis performed to statistically assess the appropriateness of the domains.
4.2 Clinical implications
The results of this study suggest that physicians should keep the following in mind when communicating any bad news to AYA patients: 1) understand the preferences of each patient regardless of their age, 2) discuss the physical and social effects unique to the AYA generation, 3) explain the long-term risks involved in treatment choices so that they are fully aware, 4) avoid excessive empathy, and 5) support decision-making based on bad news.