Introduction
Bowel cancer is one of the most common malignant tumours in the world. 2020 Global Cancer Statistics report that CRC has the third and second highest incidence and mortality rates of all malignant tumours.1 According to the 2020 China Cancer Statistical Report,2 376 000 new cases of colorectal cancer and 191 000 deaths were reported in China, ranking second and fifth, respectively, among all malignant tumours, with an incidence rate second only to lung and gastric cancers. According to the latest data released by the National Cancer Centre 2022,3 there were 4 064 000 new cancer cases and 2 413 500 new cancer deaths in China in 2016, with related medical expenditure of more than ¥220 billion, and cancer remains a significant public health problem in China. The global cost of cancer is expected to reach US$47 trillion by 2030, with cancer causing high mortality and excessive charges to governments and societies.4 It is estimated that the total cost of treating patients with colorectal cancer in the USA is US$6.5 billion annually.5 The literature shows that the annual growth rate of medical expenditure for patients with colorectal cancer has been as high as 7% over the past 10 years.6 In recent years, the advent of numerous novel antitumour medications has significantly bolstered the survival rates among patients with colorectal cancer. However, concomitant with these advancements, the exorbitant expenses associated with these drugs, coupled with the prolonged necessity for patients with colorectal cancer with fistulas to use stoma bags, have engendered substantial financial strains on both the patients and their families. One study reported that the median hospitalisation cost for patients with colorectal cancer in China was US$35 042.85.7 The future costs of colorectal cancer treatment continue to rise, mainly because the incidence of colorectal cancer is increasing.1
The term economic toxicity is most commonly found in the 2012 study by Bullock et al on the attitudes of patients with cancer towards communicating the cost of care,8 where Bullock et al suggested conceptualising the discussion of the cost of cancer treatment and care. Following this, Zafar et al established the concept of economic toxicity, delineating it as the financial burden borne directly by patients with cancer, which in turn compromises their quality of life, thereby constituting an adverse event within the realm of oncology treatment.9 This concept encapsulates the profound financial strain or emotional distress engendered by the costs associated with cancer therapy, impacting both patients and their families. With the expansion of therapeutic options and the introduction of new anticancer drugs, the survival rate of patients with cancer has improved. However, this progress has concurrently led to increased medical costs, adversely affecting patients’ lives. Economic toxicity, akin to other physiological factors, influences subsequent treatment and care. Despite its significant impact, the economic consequences of cancer treatment have not received adequate attention in relevant fields. Consequently, there is an urgent need to conceptualise and address economic toxicity comprehensively.10 International scholars, including LaRocca, have undertaken the conceptualisation and analysis of cancer-related economic toxicity. They have delineated that the preconditions for the emergence of economic toxicity in the context of cancer are the direct or indirect medical costs borne by patients during anticancer treatment, resulting in heightened economic outlays and diminished income.11 The fundamental attributes characterising this concept encompass both an objective economic burden and a subjective experience of economic hardship. From an objective point of view, patients face a financial burden due to the direct and indirect costs associated with cancer treatment, which is expensive, and many patients face unexpected out-of-pocket (OOP) expenses. At the same time, there are financial barriers such as lack of health insurance or inadequate insurance, or the problem is further complicated by forced changes in employment status. Patients make financial sacrifices such as cutting back on household spending, using savings and selling possessions, or borrowing and using credit cards, leading to increased financial debt.12 From a subjective point of view, the cost of follow-up treatment and care affects patients’ life experience and adherence to treatment, and patients report feelings of anxiety, distress and pain, as well as reduced quality of life.12 This terminology resonated nationally and internationally in the oncology community when it was coined. It is a significant cause of poor outcomes and reduced adherence in oncology patients.13
In recent years, studies of economic toxicity in oncology patients have gradually been conducted both at home and abroad, and the majority of patients with cancer experience financial toxicity caused by the treatment of their disease. A survey of 180 Tunisian patients with cancer by Mejri et al
14 showed that 80.4% experienced economic toxicity. A survey of 222 patients with lung cancer by Ke et al
15 showed that 76.6% of patients reported financial toxicity. A prospective longitudinal study conducted in the Association of Southeast Asian Nations region16 found that among 9513 adult patients initially diagnosed with cancer, 48% felt they had experienced economic distress 1 year after diagnosis. In a meta-analysis of 25 financial toxicity studies, Gordon et al
17 showed that the economic toxicity of patients with cancer derived from different measurements varied. When measured by monetary measures, 28%–48% of patients were economically toxic; when measured by subjective and objective questions, 16%–73% of patients were financially harmful. Currently, studies of the economic toxicity of tumour patients focus mainly on patients with breast and lung cancer, but there are fewer studies on the financial toxicity of patients with colorectal cancer. Previous investigations have primarily concentrated on quantifying the objective economic strains imposed on patients with colorectal cancer during treatment, particularly focusing on parameters such as OOP medical expenses.18 Only in recent times, there has been a surge in interest among researchers regarding the subjective economic ramifications of economic toxicity experienced by patients with cancer. Among these subjective economic impacts, research has predominantly revolved around three core domains: material, psychological and behavioural aspects stemming from the objective economic burden.19 Scholars such as Hanna et al have contributed significantly to the quantitative exploration of economic toxicity in patients with colorectal cancer, offering valuable insights into associated factors and potential intervention strategies.20
Cross-sectional studies only represent current research and often ignore the fact that the degree of economic toxicity and the subjective experience of patients with colorectal cancer change over time. Still, qualitative studies can provide a deeper and more comprehensive understanding of the personal experience of individuals over time based on the characteristics of ‘time’ and ‘change’. With this in mind, this study used qualitative interviews to understand the inner feelings of economic toxicity in patients with colorectal cancer fistula, with the aim of providing a reference for the development of targeted interventions to reduce economic toxicity in patients with colorectal cancer.
Discussion
Patients with colorectal cancer face multiple financial burdens that require urgent attention
Treatment for bowel cancer is a long-term, recurrent process that usually takes months to years. Economic toxicity is widespread in patients with colorectal cancer due to prolonged treatment cycles, cumulative treatment costs, additional treatment and care for complications and the inability to return to work while recovering from treatment. According to a survey,24 by 2022, 75.3% of families of patients with colorectal cancer are not able to afford the financial burden of cancer treatment. Patients with colorectal cancer are mostly treated with adjuvant therapies such as radiotherapy and chemoimmunotherapy before surgery, which results in an extended treatment cycle and recovery time, and postoperative medications and nutritional supplements increase the financial burden on patients. Respondents in this study indicated that the range of costs incurred for preoperative testing, surgery, and the postoperative period put them under severe financial pressure. Colorectal cancer surgery is very traumatic, and many coexisting symptoms require the use of a variety of adjuvant drugs. The care of complications arising from treatment increase the economic toxicity of patients, and the indirect costs associated with the treatment of the disease, such as labour costs, transport costs and the cost of hiring specialised care workers, etc, also increase the financial burden on the family. In addition, the long-term or even lifelong use of fistula bags in patients with colorectal cancer after surgery creates an additional economic burden for patients. Nergiz25 showed that patients with colorectal cancer face more severe financial toxicity compared with other cancer populations due to the need to wear an ostomy bag for an extended period of life, resulting in increased material costs and lack of ease of work, which requires urgent attention from healthcare professionals. A study by Irwin et al
26 found that 94% of oncology patients wanted their doctors to communicate with them about the cost of their treatment. Still, only 14% of respondents reported that their doctors communicated with them about the cost of their treatment. As direct victims of economic toxicity, healthcare professionals have a leading role to play in helping patients reduce financial toxicity by encouraging healthcare professionals to fully inform patients about the efficacy and applicability of the treatments they are receiving before the start of the patient’s visit and to prepare a personal financial plan in advance based on the expected cost of treatment. The Zafar investigation demonstrated that initiating discussions regarding treatment expenses between healthcare providers and patients at an early stage can enhance mutual comprehension of the disease trajectory, mitigate the impact of costly interventions and enhance the likelihood of attaining high-value solutions, findings that align with those of the current study.27
Economic toxicity affects the mental health and quality of life of patients with colorectal cancer
Economic toxicity refers not only to the financial expenditure of the patients with cancer but also to the psychological impact of the financial burden on the patient. Several studies28–30 have shown that patients with economic toxicity are more likely to experience anxiety, depression, negative psychology and poor health-related quality of life than patients without economic toxicity. Gordon et al
17 surveyed 650 patients with cancer who had been ill for >6 months, and almost half of the patients reported increased financial burden due to treatment, 29% experienced depression and 36% experienced anxiety. Murphy et al
31 found that patients with economic toxicity had a significantly higher risk of PTSD (Post-Traumatic Stress Disorder) than those without financial toxicity. It is suggested that clinical medical personnel should pay attention to the psychological feelings of patients with colorectal cancer during the treatment process and take positive and effective psychological counselling measures to reduce their negative psychological burden, which may be one of the breakthroughs to reduce economic toxicity effectively. Healthcare providers can proactively identify patients with colorectal cancer experiencing financial toxicity by employing suitable assessment scales, thereby evaluating the level of risk and enabling patients to acknowledge the presence of financial challenges early in their treatment journey. Currently, the widely employed screening instrument, both domestically and internationally, is the Comprehensive Score for Financial Toxicity, featuring a scale ranging from 0 to 44. A lower total score on this scale indicates a more severe level of financial toxicity.32 Furthermore, in 2014, Khera introduced economic toxicity grading criteria comprising four levels.33 This framework encompasses a broader range of subjective and objective assessment domains for economic toxicity, facilitating healthcare professionals in grading economic toxicity levels among patients with cancer. During the interviews conducted in this study, certain patients disclosed feelings of embarrassment regarding their return to work due to the presence of a permanent ostomy bag, exacerbating their economic strain. Healthcare professionals are encouraged to enhance cancer education initiatives for patients, aiming to enhance their accurate understanding of cancer, rectify misconceptions such as reluctance to discuss cancer openly or conceal the disease and promote a positive outlook towards resuming work and embracing both work and life. Some respondents said that the high cost of colorectal cancer treatment had increased the burden on their children and families. Under China’s current income structure and healthcare system, family members are the direct bearers of the treatment costs for patients with cancer. Still, the voices of family caregivers are often easily ignored by public policy, suggesting the development of an appropriate compensation mechanism for family caregivers in China, providing them with specific and feasible support in terms of finances, time and employment and achieving the goal of alleviating the patient’s economic toxicity through the continuous improvement of the social support system for family caregivers.
Patients with colorectal cancer use a variety of approaches to cope with the financial burden
In addition to the help of healthcare professionals, patients have a crucial role in reducing economic toxicity. German researchers have found34 that patients’ mechanisms for coping with financial toxicity consist of two main aspects: on the one hand, reducing some of their daily expenses (eg, cosmetics, travel, shopping, etc); On the other hand, by increasing financial resources (eg, through third-party funding, savings, assumption of bank debt, etc), similar to the results of this study. However, some respondents carry the financial burden themselves and are reluctant to accept help from others. The reason for this is that patients with colorectal cancer often have an inferiority complex as ‘cancer survivors’. If they seek help from outsiders, they disclose the fact that they have cancer. It is suggested that healthcare professionals guide patients with colorectal cancer to face the reality of having cancer with a positive attitude and encourage family support as a basis for enhancing social support to reduce feelings of isolation. Some respondents said they would like help but did not know where to go. Encourage health professionals to increase their health insurance and financial literacy education so that they understand the basics of health insurance, the potential costs they may face during treatment and the resources available to them. Some other respondents said they did not check or stop treatment because they could not afford the expensive treatment. Overseas studies have shown that patients respond to economic toxicity by reducing treatment adherence in the distant future (eg, choosing a secondary treatment option, preceding or delaying medical care).35 In addition, patients may be able to reduce the economic toxicity of treatment by not reviewing or reducing the number of reviews that deserve the attention of healthcare professionals. It is recommended that healthcare professionals conduct follow-up studies to objectively track the long-term effects of patient adherence to subsequent treatment and prognosis due to economic toxicity. Patients with colorectal cancer who have stopped treatment due to financial difficulties may be recommended to participate in clinical trials of free drugs, which can help alleviate some of the financial toxicity of cancer treatment.
Conclusion
Focusing on the patient and family, economic toxicity is concerned not only with OOP medical expenses but also with the multiple and long-term damage caused to the patient and family by the financial burden of the disease. It is a comprehensive assessment of the patient’s treatment experience, encompassing healthcare-related expenditures, the passive use of financial resources, psychosocial impact and the search for support and coping strategies. The economic burden of patients with cancer is influenced by multidimensional and multifactorial factors such as sociodemographics, disease characteristics, treatment modalities and health insurance policies, particularly for colorectal cancer, which is a cancer with a high economic burden, and the issue of its financial commitment needs to be given more attention. Although foreign studies have investigated more economic toxicity and its impact on disease prognosis and outcome, these approaches may not apply to China due to differences in socioeconomic and cultural backgrounds and health insurance systems. Therefore, multidisciplinary and interdisciplinary exchange and cooperation are necessary. A complete prevention and control system should be established through national government policies, health insurance systems and healthcare cooperation to provide early detection, effective intervention and targeted assistance to high-risk groups to reduce the economic toxicity of patients. In this study, qualitative interviews were conducted to understand the experiences of patients with colorectal cancerregarding financial toxicity from three perspectives: subjective feelings, coping styles, and needs and expectations. Although patients themselves have adopted a variety of ways to cope with economic toxicity, there is still a need for healthcare professionals to pay attention to the issue of financial toxicity in patients. However, this study was limited to patients with colorectal cancer in this ward, and although a diverse sample was selected, it is still biased; more in-depth studies on economic toxicity need to be conducted in the future by choosing patients with colorectal cancer from different regions.
This post was originally published on https://bmjopen.bmj.com