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Original research
Exploring the economic toxicity experiences and coping styles of patients with colorectal cancer fistula in Jiangsu province, China: a qualitative study
  1. Weijing Zhao1,
  2. Qin Xu2,
  3. Xia Zhou2,
  4. Chunmei Liu2,
  5. Lingyu Ding3
  1. 1 Lianyungang Clinical College of Nanjing Medical University /The First People's Hospital of Lianyungang, Lianyungang, Jiangsu, China
  2. 2 School of Nursing, Nanjing Medical University, 101Longmian Avenue,Jiangning District,Nanjing, 211166, China
  3. 3 Department of Colorectal Surgery, The First Affiliated Hospital With Nanjing Medical University, Nanjing, 210000, China
  1. Correspondence to Professor Qin Xu; qinxu{at}njmu.edu.cn

Abstract

Objectives In recent years, economic toxicity has significantly affected the physical and mental health as well as the quality of life of patients with colorectal cancer. However, this issue has not garnered adequate attention from healthcare professionals. This study aims to investigate the experiences of economic toxicity and coping strategies among patients with colorectal cancer fistula. The findings are intended to inform the development of suitable and effective intervention programmes to address economic toxicity within this patient population.

Design A descriptive phenomenological approach was employed in this qualitative research, using a semistructured method for data collection and analysis of interview data. Traditional content analysis methods were applied, encompassing coding, categorisation and theme distillation. Data analysis continued until thematic saturation was achieved, with no new themes emerging.

Setting Nanjing Medical University Lianyungang Clinical Medical College.

Participants A total of 21 patients with colorectal cancer fistula were selected as interview subjects through purposive sampling. The selection took place from May 2022 to May 2023, involving patients during their stay at a tertiary hospital in Lianyungang city, Jiangsu province, China.

Results In total, three pieces and eight subthemes were distilled: subjective feelings (worries about treatment costs, concerns about uncertainty about the future, worries about daily life), coping styles (coping alone, unwillingness to help, prepurchased insurance, dealing with illness, giving up treatment, inability to afford costs) and needs and aspirations (need for health policies, need for social support).

Conclusions Patients with colorectal cancer fistulae experience economic toxicity, leading to significant impairment in both physical and mental health. Despite employing various coping strategies, healthcare professionals must prioritise addressing the economic toxicity issue in patients. Implementing rational and effective interventions can greatly assist patients in effectively managing economic toxicity.

  • HEALTH ECONOMICS
  • Health economics
  • QUALITATIVE RESEARCH
  • ONCOLOGY

Data availability statement

Data are available upon reasonable request.

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Strengths and limitations of this study

  • Novelty and focus: this study addresses a relatively under-researched area by being the first to explore the experiences of economic toxicity and coping strategies among patients with colorectal cancer using qualitative research.

  • Methodological depth: using a descriptive phenomenological approach, this study provides an in-depth understanding of the experiences of patients with colorectal cancer in relation to economic toxicity, examining subjective feelings, coping strategies and their needs and expectations, thereby offering a comprehensive perspective.

  • Scope and generalisability: as a single-centre study, the research is limited in scope. While the sample was diverse, future research should include patients with colorectal cancer from various regions to enhance the depth and generalisability of the findings.

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.

Method

The research team and process reflect

Personal characteristics of the researcher

This descriptive study employs the researcher herself as the primary research instrument. The researcher holds a master’s degree and holds the title of supervisory nurse, bringing over a decade of experience in caring for patients with postoperative colorectal cancer, thus possessing extensive clinical nursing expertise. Prior to commencing the study, the researcher underwent training facilitated by a professional psychology professor and received specialised instruction in interview techniques.

Researcher–participant relationship

Before initiating the interview process, the researcher endeavours to establish a rapport with the participants, fostering a comfortable and welcoming environment. Subsequently, the researcher transparently elucidates the research objectives to the participants. In selecting the venue and scheduling the interview, the researcher accommodates the preferences of the interviewees, prioritising their comfort and convenience. Prior to the commencement of the interview, the researcher shares personal background information with the participant, aiming to cultivate trust. Additionally, the researcher initiates casual conversations on everyday topics to alleviate any tension or formality surrounding the interview. Simultaneously, the researcher reiterates the ethical guidelines of the interview to the participants, emphasising their autonomy to decline certain topics or conclude the interview at any point.

Study design

Theoretical framework

A descriptive phenomenological approach was employed in this qualitative research. This method observes a particular phenomenon, analyses its internal and external components, distills the essential elements and explores the relationships between these elements and their surrounding context. This approach is widely used in qualitative research for its effectiveness in providing a deep understanding of complex phenomena. Examples of this approach include studies on the feelings of caregivers of family members with dementia21 and the psychological experiences of patients with breast cancer following postoperative breast loss.22

Study subjects

Purposive sampling was used. Patients diagnosed with colorectal cancer fistula, admitted to a tertiary hospital in Lianyungang city, Jiangsu province, China, between May 2022 and May 2023, were selected for interview. Inclusion criteria: age>18 years; diagnosis of colorectal cancer confirmed by pathological tests; need to wear a colostomy bag permanently after surgery and chemotherapy; informed consent and voluntary participation in this study. Exclusion criteria: impaired communication and understanding; psychiatric disorders; secondary diseases or other malignancies. Subjects were selected by taking into account factors such as gender, education, annual household income, type of health insurance, marital and employment status, etc, using the method of large variance to obtain a rich and representative study population. The sample size met the principle of subject saturation, and a total of 21 cases of research subjects were included. Details are given in table 1.

Table 1

General information on patients with colorectal cancer fistula

Research site

The interview location was selected according to the time agreed between the researcher and the interviewee, and to eliminate the unfamiliarity and tension of the research participants, the principle of the interview location was based on the comfort and relaxation of the interviewees. The interview location in this study is an unoccupied meeting or communication room. The researcher consult with the interviewees in advance to determine the specific interview time, and most participants choose after dinner. The interview time was set at 30–60 min.

Data collection

Determine the outline of the interview: reviewing relevant literature on ‘colorectal cancer’ and ‘economic toxicity’, three patients with colorectal cancer were selected for preliminary interviews, using language that was easy to understand. Following the interviews, the initial interview outline was refined and modified with input from colorectal cancer clinical nursing experts, resulting in the final draft. Beginning with a broad question such as, ‘what was your financial situation before your colorectal cancer diagnosis?’ the interview gradually delved into topics such as the financial burden post surgery, the impact of treatment-related financial issues on various aspects of life, coping mechanisms employed, avenues sought for external assistance in dealing with financial challenges and any additional inquiries participants wished to address.

Conducting interviews: data collection was semistructured. At the beginning of the interview, patients were informed about the methodology, purpose and significance of the study, and their trust was gained before the follow-up interview was conducted. During the interview, open-ended questions were asked, without subjectively inducing patients to answer; the researcher had to maintain a neutral attitude, allowing patients enough time to think about each question, without rushing patients and interrupting them in the middle of the interview. By the time the 21st patient was interviewed, the interview was saturated with content and no new themes were emerging. After the interviews, the researcher collated the content of the interviews and provided timely feedback to the interviewees to confirm the clarity of their responses to certain ambiguous responses. The entire interview was audio recorded and transcribed to avoid missing or distorted content. To ensure the completeness of the interviews, one researcher was responsible for converting the audio recordings of the interviews into textual material within 24 hours of the interviews being completed, and another researcher was responsible for reviewing the textual material. The results of the interviews were anonymised, with the numbers P1–P21 replacing the names of the interviewees to protect their privacy.

Data analysis

The data collected were stored and managed using Nvivo V.12.0 qualitative data analysis software. Analysis of the data was conducted employing traditional content analysis methodologies.23 The qualitative data collected were stored and managed using NVivo V.12.0 qualitative data analysis software. Subsequently, the data underwent analysis employing the traditional content analysis method. The methodology involved several steps: (1) immersing in the textual material comprehensively. This phase encompassed multiple iterations of listening to audio-recorded materials, meticulously reviewing all interview transcripts and navigating through the textual content to develop a comprehensive understanding of the research subjects’ descriptions and to capture the overarching essence of the textual materials. (2) Open coding. Following an initial comprehension of the entire text, the researcher proceeded with open coding of the textual materials. To ensure comprehensive coverage and prevent the oversight of important textual details, the researcher meticulously coded the materials on a sentence-by-sentence basis. (3) Following the initial coding of the original data, similar and closely related codes were identified and extracted for integration and categorisation. This process facilitated the formation of overarching themes and subthemes by synthesising related codes. (4) After establishing the initial subthemes and themes, the researcher revisited the original text for thorough comparisons, analysing the potential logical relationships between each theme and subtheme. Through continuous discussion with the research team, a definitive thematic conclusion on the experience of economic toxicity in patients with postoperative colorectal cancer stoma was derived, ensuring a comprehensive understanding of the data and its implications.

Quality control

(1) Before conducting the formal interviews, the researcher extensively reviewed domestic and international literature on the economic toxicity experienced by oncology patients. Drawing on this literature, the researcher formulated an interview outline to guide the structured questioning process. (2) To enhance the richness of the collected data, patients with colorectal cancer of varying genders, ages, education and other demographic characteristics were selected as interviewees. Prior to conducting the interviews, the interviewers received professional training in qualitative research methods. (3) To ensure the accuracy of the interview data, the interviewer was required to record the interviewee’s words verbatim and to double-check the content of the transcribed text and recording during the interview process. During the coding process, a double coding approach was adopted by the researcher herself and each data item was given equal importance. In the process of developing themes, each theme was checked against all relevant extracts, and the themes were returned to the original dataset for verification.

Patient and public involvement

Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Results

General information

A total of 21 patients with colorectal cancer fistula were interviewed in this study.

Theme 1: subjective feelings

Concerns about the cost of treatment

Patients with colorectal cancer incur several treatment costs during their hospital stay, including the costs of preoperative evaluation, adjuvant radiotherapy, immunotherapy and surgery. Furthermore, postoperative patients experience delayed recovery of gastrointestinal function, necessitating prolonged fasting periods, resulting in enteral and parenteral nutrition expenses. Additionally, extensive surgical wounds, adjunctive drug therapy for postoperative complications and the requirement for permanent colostomy bag usage to prevent infections, requiring regular replacement, contribute to the overall treatment costs. The cost of all these treatments places a severe financial burden on patients. P8 “Surgery has not yet started; just check the costs. I have spent a lot of money, and the hospital can not reimburse any costs; I do not know how much more money, and I do not want to see a doctor again.” P2: “In addition to the cost of medical treatment, my children have to take a taxi to the hospital every day to look after me, and this trip costs money.” P6: “The operation has already cost a lot of money. The doctor told me that I would have to use a fistula bag for the rest of my life and that it would cost me money to replace it every time, and I wouldn't be able to earn any money in the future, so what can I do in the future?” P3: “In addition to the cost of the daily treatment, my children go to work every day and don't have time to take care of me, and the specialist carer I have hired for me, all these are additional treatment costs (hey) it’s expensive to have an illness.” P1: “After the operation, we're not allowed to eat, and we're fed every day from this feeding tube, several bags a day, and it all costs a lot of money; it’s worrying.”

Concerns about future finances

Due to the heavy financial burden of high treatment costs, patients with colorectal cancer expressed a sense of helplessness about their future lives and a sense of guilt towards their families during the interviews. P11: “Since this illness, the family is worried every day, now hospitalized, the children are filially accompanied in hospital, delaying their work, dragging them down, the heart is very guilty.” P18: “This time, it was cured; I don't know if it return after discharge. I must wear an enterostomy bag daily; I certainly can't return to work; I'm baffled inside.” P4: “I don't know if I need to continue with the medication and review when I get home from the hospital, and I don't know how much it cost in the future.”

Concerns about daily life

Most respondents said that financial pressures had led to changes in their previous lifestyle. P5: “Before I got sick, I used to travel 2–3 times a year, but now that I'm sick and spending so much money, I don't dare go out, and I rarely go out to eat.” P12: “After spending a large part of the money I had saved from work over the years on medical treatment, I definitely can't splurge as I used to, and I have to cut back on my daily expenses and my quality of life has been greatly reduced.” P21: “I had two years to go before I retired, and because of this illness, I had to retire early, which affected my pension, and it would have been too expensive to go to the doctor, so I lost a lot of money.”

Theme 2: ways of responding

Coping alone and unwillingness to accept help

Some respondents said they could use their savings to cope with the financial burden. P17: “My husband has been working very hard for the elderly and the children, and since he has this illness, I don't want him to work any harder, and I have earned all the money for my treatment over the years.” P10: “I don't want anyone else to know about the illness except the family, and people outside can't help much, even if they know.”

Prepurchase medical insurance to deal with illness

Some respondents indicated that they had planned to take out insurance before they became ill to reduce the burden of treating their conditions through the payment of benefits. P14: “A few years ago, when my mother was ill and spending a lot of money on treatment, my husband bought me an insurance policy that I can use this time when I'm ill, and it’s a lot less stressful.” P20: “is fortunate to have bought major medical insurance before getting sick, more than ¥10 000 of hospital costs; if the insurance company side can be paid, do not have to worry about the cost of the problem. I hope to be able to take care of the disease.”

Abandonment of treatment and inability to cover costs

As the disease progressed and time passed, some respondents learnt from their doctors about the progression of the disease and the expected costs and planned for the cost of treatment on their family’s financial resources. P9: “I have discussed with my family, young and old, that if the cost of treatment is beyond the means, I decide to stop treatment so as not to burden my family.” P13: “The doctor said that the bowel cancer could come back in the future and asked me to have regular check-ups; this hospital stay cost me almost all my savings; I don't intend to have a check-up after this discharge; I leave it to fate in the future.”

Theme 3: needs and expectations

Expectations for health insurance policies

Some respondents hoped that the National Healthcare Security Administration of China (HPSC or NHSA, NHSA is preferred) would expand the types of cancer drugs that are reimbursed, reduce the prices of cancer drugs and increase the reimbursement rate. P15: “(Hey) some imported anti-cancer drugs are too expensive, the effect is perfect, but we can't afford to use them, I hope to be able to include these drugs in the health insurance so that we can choose to use them.” P16: “Now it’s all about getting a lot of material from the hospital after you've seen a doctor and been discharged to get reimbursed, and I hope that in the future, it would be good to swipe the health insurance card directly and get reimbursed directly after swiping it.”

Demand for social support

Some respondents expressed the hope of receiving support from a third party to ease their financial burden. P19: “I hope to get help from the outside world or charitable organizations. I checked the Internet, and there is a kind of water drop fundraising donations, more or less able to share some of my financial pressure.” P7: “Doesn't want to borrow money from relatives or friends and would like to ask some organizations in the community for help but doesn't know how to go about it.”

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.

Data availability statement

Data are available upon reasonable request.

Ethics statements

Patient consent for publication

Ethics approval

This study involves human participants and was approved by ethics number Lianyungang Clinical Medical College, Nanjing Medical University (KY-20220722003.A01). Participants gave informed consent to participate in the study before taking part.

References

Footnotes

  • Contributors Conceptualisation: WZ and QX. Methodology: WZ. Data collection: WZ, XZ, CL and LD. Formal analysis: WZ. Roles/writing—original draft: WZ. Writing—review and editing: WZ and QX. Guarantor: WZ. All authors read and approved the final manuscript.

  • Funding This research was funded by the Jiangsu Province’s 14th ‘Six Talent Peaks’ Fund Project (SWYY-200).

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Provenance and peer review Not commissioned; externally peer reviewed.