In the present study, difficulty for cancer patients and their spouses in dealing with social problems was investigated and compared. Because there have been few studies that directly examined these problems, we would like to discuss them in associations with their consequences, such as depression, distress, morbidity, burden, unmet need, and decreased quality of life.
Comparison of difficulty between patients and spouses
The degree of difficulty was higher in the patient than the spouse group for all subcategories except “difficulty in seeking expert advice on the disease state and treatment (lack of opportunities to consult for patient transfer arrangement, hospital selection, second opinion, psychological counseling, etc.).” Patients and partners are interdependent in that cancer impacts on their shared life, both emotionally and practically. However, no conclusion has been reached on whose distress is more severe because there are conflicting reports. While some reports indicate that distress severity is comparable between patients and their spouses or partners, other reports indicate that patients’ distress is more severe than that of their spouses or partners, and there are even reports indicating that distress of spouses or partners is more severe than that of patients . Hodges et al.  investigated mental distress of spouses or partners of patients over the course of disease and confirmed that the distress of spouses or partners significantly correlated with that of patients. Then, they indicated that the mental distress of spouses or partners gradually increases after diagnosis and becomes more strongly correlated with that of patients. Because currently treated patients and spouses of such patients accounted for 50% of the subjects in the present study, the degree of difficulty perceived by the spouses might not have been as high as that of difficulty perceived by the patients. However, we assume that the degree of “difficulty in seeking expert advice on the disease state and treatment” in the spouses was as high as that in the patients because spouses were greatly involved in treatment of patients soon after diagnosis.
Difficulty perceived by the young spouses
In the young subgroup, the degree of difficulty perceived by the spouses was as high as that of difficulty perceived by the patients for all subcategories except “difficulty in adapting to changes in the social environment (I feel that my appearance has changed or that I am treated differently).” People aged 39 years or younger, who were classified as the younger generation in the present study, are called “adolescents and young adults (AYA).” Cancer patients in the AYA generation experience, after diagnosis and treatment, not only difficulties associated with social relationships, work, academic background, property, etc., but also many physical and psychosocial problems, such as interruptions to romantic and/or intimate relationships, reconsideration of family planning, infertility, and body image dissatisfaction [19, 20]. For this reason, young caregivers in this generation often seem to feel burdened [21, 22] and to perceive a high degree of difficulty.
Difficulty perceived by female spouses
For the combination of a male patient and a female spouse, the degree of difficulty perceived by the spouses was as high as that of difficulty perceived by the patients for “difficulty in seeking expert advice on the disease state and treatment (lack of opportunities to consult for patient transfer arrangement, hospital selection, second opinion, psychological counseling, etc.),” “complaint with health care providers,” “lack of information on treatment and disease state,” “lack of information on self-care (lack of knowledge on nutritional needs of patients or how to deal with anxiety),” “concerns for family members,” “lack of local support services,” “difficulty in making financial arrangements,” and “lack of information on welfare services available during treatment (lack of knowledge on the nursing-care insurance system or nursing-care facilities and equipment).” Generally, compared to men who take care of their wives with cancer, women who take care of their husbands with cancer have higher mental morbidity (high levels of distress, depression, and anxiety, and a low level of mental health), physical morbidity (low physical health score, decreased physical function, and loss of physical fitness), and social morbidity (low satisfaction in marriage and limited social support) [12, 23, 24]. Ussher et al.  attributed this to the fact that women caregivers are positioned as all-encompassing expert careers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning are over-responsibility and self-sacrifice, physical costs and overwhelming emotions. Men caregivers positioned caring as a competency task which they had mastered, and which provided them with satisfaction.
The present study has several limitations. First, the results may have been affected by measurement bias because of the use of data from internet-based surveys. Data reliability is limited by the facts that the participants in these surveys determined whether they met the eligibility criteria and that data on diagnosis, treatment regimens, etc., were self-reported. Thus, in future studies, more accurate medical data need to be collected by conducting questionnaire or interview surveys at medical institutions in combination with review of medical records. However, a merit of an internet-based survey is that it guarantees anonymity and allows participants to respond without worrying about health care providers. Second, because of arrangements for this study and funding issues, several years passed between the patient and spouse surveys, and we were unable to collect data from patient-and-spouse pairs. These facts may also have contributed to measurement bias. The degree of social difficulties differed between the patients and spouses in the present study because both groups might have had different underlying problems. Thus, in future studies, patient-and-spouse pairs need to be targeted and surveyed around the same time. However, in this study, comparison was made while the differences in background problems were minimized as much as possible by matching propensity scores for data on sex, age group, and presence or absence of recurrence. Third, an analysis of non-responder or cancer patients who did not experience social difficulties is key to gaining information about a possible sample bias that might impact study results. This was not done in this study. Fourth, an unstandardized scale was used in this study. That is why we prepared the scale using the KJ method and confirmed the reliability with an α coefficient.