In this study, we found that the top most concerns of entire cohort of cancer survivors were cancer treatment and the risk of recurrence, long-term treatment effects, fear of recurrence, financial concerns and fatigue. A few of these issues, such as cancer treatment and recurrence risk and long-term treatment effects were key concerns among patients throughout the whole cancer trajectory. The study also revealed that patients who were newly diagnosed and on treatment and those who had completed treatment or on follow-up were also concerned about keeping their primary care physician informed about their treatment and recurrence risk.
Cancer treatment related acute and late side effects have been well reported in the literature [3,5,8–12,14,15,30]. It has also been reported that even 20 years after stopping cancer treatment, the risks of recurrence (distant or contralateral breast) was present [31]. In our study, the fear of recurrence (FOR) was the top emotional concern among the cancer survivors and also throughout the cancer trajectory. This finding has also been reported by other studies [14,21,32–40]. Evidence in literature reveals the negative impacts associated with FOR, including emotional distress [41], functional status [42] and quality of life [42–45]. Unlike other studies, we find that higher FOR is not associated with poorer quality of life of survivors. A recent study by Cho and Park [46] on 292 adolescent and young adult cancer survivors found that the negative association between FOR and mental health-related quality of life (HRQOL) was moderated by perceived growth (such as relating to others, personal growth, new possibilities, appreciation of life and spiritual life). In view of the moderating effects of perceived growth on the FOR-HRQOL links, enhancing on the growth perception may also be an strategy worth considering. As our study only measured the respondents’ overall quality of life and we did not measure the perceived growth, this finding warrants further study.
Based on current evidence, cancer treatment with its inherent side effects and whether it is efficacious and the FOR are the most distressing concerns in cancer patients throughout their cancer trajectory warrant the monitoring for the acute and long-term effects and underscores the importance of creating an information and supportive care environment that addresses survivors’ information needs and emotional support over time. This could also include assessments for symptoms and distress, and the adoption of the use of survivorship care plans (SCPs) [47,48]. SCPs have been recommended by the Institute of Medicine (IOM) [49] as a tool to assist cancer survivors transit from cancer treatment to follow-up care through educating survivors and providers with comprehensive health information and resources [48]. This would also potentially address their concern about the integration of survivorship care between oncology and primary care settings
Financial concerns were amongst the top concerns for patients who were either undergoing or about to undergo treatment in this study. As demonstrated in other studies, financial burden of cancer treatment is high and respondents expressed a great deal of worry about financial matters [38,45,50,51]. Cancer, its treatment, or the lasting effects of treatment can take a financial toll on the cancer survivors. The most financially impacted and at risk of going into debt are the adolescence and young adult [52]. In our study, those with lower economic status including those staying in Housing Development Board (HDB) housing type are at higher risk of poorer QOL. Evidence [32,40,53] also indicates that increased financial burden as a result of cancer care costs is the strongest independent predictor of poor quality of life and adverse psychological issues such as depression, anxiety, and distress [53,54] among cancer survivors. As quality of life is negatively affected by financial burden, early identification of at risk patients and referrals to financial support services may help lessen this concern. At the state level, efforts to manage the escalating cost of cancer treatment, provision of better financial coverage and support and addressing the aspect of unemployment of cancer patients would be needed.
Fatigue was the most prevalent physical concern and one of the predictors for QOL of patients in this study. Cancer-related fatigue is a well-established concern for cancer survivors [8,32,34,37–39,45,55,56]. Fatigue reduces QOL by affecting a patient’s self-concept, appetite, activities of daily living, employment, social relationships and compliance with medical treatment [8,37,55,57], and may lead to treatment discontinuation and reduced survival [58]. Our study also found that fatigue was a major concern of the longer term cancer survivors which suggested that fatigue might have some lingering effect after cancer treatment. Bower’s [58] review suggests that approximately slightly more than a quarter cancer survivors experienced persistent fatigue through 10 years after cancer diagnosis and that is underreported by patients and undertreated by clinicians. Currently, little is known about the actual mechanisms that cause fatigue in cancer survivors. Nevertheless, the negative association between fatigue concern and QOL warrants more effective fatigue assessment, education and monitoring of patients in order to increase their functional capacity and self-care ability after cancer treatment.
Besides fatigue, this study also found that patients who had physical concerns of pain, had poorer QOL. Pain is one of the most feared, distressing and burdensome symptoms in cancer patients [59,60]. Uncontrolled pain affects functional capacity of cancer patients and hinders the ability to have control over their activities and enjoy their everyday life [61]. Our findings are consistent with other studies. For instance, Heydarnejad et al. [57] found that QOL of patients undergoing chemotherapy was lower in patients with pain than to those who had no pain. As uncontrolled pain can have a detrimental effect on the patient’s QOL, and adequate management of cancer pain is crucial in improving the physical functioning of the cancer patients and their QOL, therefore assessment and monitoring of pain over the entire cancer trajectory are also critical for clinical identification of patients who might benefit from enhanced medical attention resulting in an improved QOL.
The finding that patients who had chemotherapy were more likely to report at least one issue of concern in all the domains except the spiritual domain may indicate that many patients experience side effects of chemotherapy. The side effects of chemotherapy are well reported in the literature [3,5,30,62]. As some side effects can be serious and life threatening, the finding also highlights the importance of establishing and monitoring these side effects during treatment and throughout their cancer trajectory.
This study also found significant difference in QOL between patients who were concerned with the most prevalent issue and those who were not for the newly diagnosed and recurrence patients, but not within those who had completed treatment. It is not surprising that newly diagnosed and recurrence patients’ QOL is more significantly affected as these are vulnerable times in the survivorship trajectory and the psychological distress confronting them is well reported in the literature [4,63–65]. This finding also underscores the importance of creating an environment that assesses, monitors and supports the information and supportive care needs for these at risk patients.This is critical as well informed and supported patients have been associated with many positive outcomes, including, increased patient involvement in decision making, increased satisfaction with treatment decisions, enhanced coping during the diagnostic, treatment and post treatment phases of illness, decreased anxiety and mood disturbances, and less emotional distress [18,19,23,66–68].