Availability and accessibility of services to address financial toxicity described by Australian lung cancer patients and healthcare professionals
PurposeAlthough the financial burden and impact of a cancer diagnosis has been widely described in international literature, less understood is the availability and accessibility of services to ameliorate this need. This study reports the experiences of Australian lung cancer patients and health professionals delivering care, regarding factors that exacerbate and mitigate financial stress, and availability and accessibility of services to support people following a cancer diagnosis.MethodsQualitative semi-structured interviews with twenty-three lung cancer patients attending two metropolitan tertiary health services and eleven health professionals delivering care were undertaken during July–August 2021.ResultsNeither health service systematically screened for financial toxicity nor routinely provided information regarding potential financial impacts during consultations. Patients experienced lengthy delays in accessing welfare supports, provoking financial stress and worry. Health professionals reported limited resources and referral services to support patients with financial need; this was especially problematic for patients with lung cancer. They described its psychological impact on patients and their family members or carers and warned of its impact on ability to adhere to treatment.ConclusionAvailable and accessibility of services addressing financial toxicity in Australian lung cancer patients is inadequate. Although financial stress is a common, distressing problem, health professionals feel hampered in their ability to help due to limited service availability. Left unaddressed, financial toxicity can impact treatment adherence, directly influencing health outcomes, and increase risk of poverty, amplifying social inequities. Findings highlight opportunity for actionable interventions like financial consent and routine screening and discussion of financial toxicity across care pathways.
- Research Article
40
- 10.1111/ajco.13508
- Feb 10, 2021
- Asia-Pacific journal of clinical oncology
The FACT COST is a patient-rated measure of financial toxicity, developed and validated in a North American population. We aimed to confirm the validity and reliability of the FACT COST in Australian cancer patients, because the Australian healthcare funding structure is different to that in North America. A single center, cross-sectional study design investigated financial toxicity in oncology outpatients. Eligible adults had current malignancy, with or without active cancer treatment. The primary endpoint was the degree of financial toxicity experienced via the COST questionnaire; secondary endpoints included health-related quality of life (Functional Assessment of Cancer Therapy-General), anxiety, and depression (Hospital Anxiety and Depression Scale). Clinical and demographic data were recorded. Statistical analysis determined the internal consistency, test-retest reliability and validity of COST, and correlations between COST score and secondary endpoints. A total of 257 patients participated (79% response rate). Fifty-three percent were female; median age 63 years (range 19-88). COST scores were skewed toward less financial toxicity, median 26 (SD 10.3, range 1-43), lower scores indicating higher toxicity. High internal consistency (Cronbach's α=0.884), test-retest reliability (ICC=0.801), and convergent validity were demonstrated. Financial toxicity was greatest in younger participants, those with more inpatient admissions, those with a change in employment status following diagnosis, and those in the lowest income quintile. Financial toxicity was associated with worse health-related quality of life, and greater depression and anxiety. The COST measure of financial toxicity demonstrated acceptable validity parameters in an Australian outpatient population. Greater financial toxicity was associated with worse psychological well-being and with certain patient demographics.
- Research Article
- 10.1200/jco.2024.42.16_suppl.11060
- Jun 1, 2024
- Journal of Clinical Oncology
11060 Background: High costs of cancer treatment exert substantial financial toxicity for patients undergoing treatment. Growing literature suggests lasting financial toxicity (FT) after treatment completion. This calls for the development and integration of mitigating strategies in survivorship care to reduce FT; thereby improving the overall well-being of survivors. Methods: Cross-sectional survey data from 347 head and neck cancer survivors were analyzed to explore the relationship between FT and potential targets for intervention. We measured FT using the COmprehensive Score for financial Toxicity (COST, v1), and defined severe, moderate, and mild-to-no FT as having COST score ≤13, 14 to 25, and ≥26, respectively. The survey also collected information on demographics, quality of life, work and activity impairment, and cancer care coordination (CCC) communication and navigation subscales. We conducted logistic regression to examine which COST item is most predictive of severe FT, and mediation analysis using structural equation model to explore potential targets for interventions to reduce FT. Results: The average age of respondents was 65.5 yrs (SD=11.3). 334 completed COST; 6.3%, 22.2% reported severe and moderate FT, respectively. Study cohort included 20% diagnosed within 2 yrs, 45% 3-4 yrs and 35% ≥5 yrs; the proportion of patients reporting severe FT did not decrease by year since diagnosis (6%, 5.3%, and 7.7%, respectively, P=0.73). Of the 11 items in COST, financial stress was most predictive of severe FT. Survivors who rated financial stress as “very much” or “quite a bit” were 92.8 (P=0.02) times more likely to have severe FT. Higher financial stress was significantly associated with being < age 65, having higher comorbidity score, lower CCC-navigation score, higher activity impairment; navigation and activity impairment are potentially actionable. None of these four variables were statistically significantly associated with severe FT. Mediation analysis showed financial stress has strong mediation effect on severe FT, and survivors with low CCC-navigation scores and high activity impairment were 3.2 times (95% CI: 1.3 – 7.8; P=0.01) and 2.5 (95% CI: 1.1 – 5.2; P=0.02) more likely, respectively, to report high financial stress. Survivors with high financial stress were significantly more likely to be interested or very interested in receiving resources covering financial issues compared to those without (63.4% vs 17.8%, P<0.01). Conclusions: Survivorship care that incorporates interventions designed to improve coordination and navigation and decrease activity impairment can potentially mitigate FT for cancer survivors through reducing their financial stress. The Centers for Medicare and Medicaid Services began paying for navigation services in 2024, opening the opportunity to integrate these interventions into covered navigation services.
- Research Article
- 10.1093/ije/dyab168.048
- Sep 1, 2021
- International Journal of Epidemiology
Background While relative survival is commonly used to describe cancer prognosis, its interpretation remains confusing. Alternative measures provide additional insights into the survival experience of Australian cancer patients. Methods Population-based cohort of over 2 million Australians diagnosed with 19 types of primary invasive cancer from 1982 to 2014 with mortality follow-up to 31 December 2015. Flexible parametric survival models were used to estimate loss of life expectancy, avoidable cancer deaths, crude survival, probability of cure and survival of uncured population for cancers diagnosed in Australia. Results There has been an overall decrease in the loss of life expectancy caused by a cancer diagnosis. Australians diagnosed in 2014 will gain an extra 432,588 life years due to the improvement in relative survival since 1982. Similarly, 29% (females) and 40% (males) of expected cancer deaths among the 2005-2014 cohort will be avoided compared to the 1985-1994 cohort. While the 10- year crude probability of cancer deaths decreased over time, patterns varied by cancer type. The crude probability of competing deaths increased with age. Between 1982 and 2009, the cure proportion increased significantly for all cancers. Conclusion Alternative measures of survival may help communicate the reducing impact that a cancer diagnosis has on average life expectancy. Key messages The growing number of Australian cancer survivors can pose emerging challenges to these patients, their caregivers, medical professionals and health-care systems in accessing or providing evidence-based survivorship and psychosocial care after a cancer diagnosis.
- Research Article
1
- 10.1108/ijhrh-10-2014-0027
- Jun 15, 2015
- International Journal of Human Rights in Healthcare
Purpose– The purpose of this paper is to examine ethnic Australian urological cancer patients and the positive life changes that those patients report after cancer diagnosis.Design/methodology/approach– A sample of 50 Australian urological cancer patients of ethnic origin were chosen to participate in this study. One-on-one semi structured interviews were conducted with the patients.Findings– Cancer diagnosis often serves as an impetus for making positive lifestyle changes. Most (98 per cent) of this study’s participants reported that they made positive lifestyle changes following a diagnosis of cancer. Those positive lifestyle changes include: greater appreciation of health and life (100 per cent); improved diet (94 per cent); closer relationships with family and friends (90 per cent); more frequent visits to the doctor for check-ups (74 per cent); increased physical activity (48 per cent); starting a new hobby (36 per cent); greater knowledge about their health in general (32 per cent) and increased spirituality (22 per cent).Research limitations/implications– The limitation of this study is the small sample of patients with ethnic diversity specific to western Sydney. Larger multicentre studies across Australia are required to confirm the findings. Additionally, this study focused on positive life changes, because 98 per cent of the participants reported positive lifestyle changes after diagnosis. However, there are related negative health behaviour changes, which this study has not addressed in depth. Furthermore, a comparison between positive life changes of ethnic Australian patients’ against the experience of post cancer diagnosis of non-ethnic Australian patients could investigate this issue further and possibly provide further insight.Originality/value– The majority (98 per cent) of the participants report positive lifestyle changes following urological cancer diagnoses. The patient population of predominantly elderly (84 per cent), males (90 per cent) differs from the current literate which states that positive lifestyle changes (posttraumatic growth) are mainly found to be significantly correlated to being female, younger and non-white and greater event severity.
- Research Article
7
- 10.1007/s00520-017-3851-0
- Sep 1, 2017
- Supportive Care in Cancer
There is an obvious mismatch between the high reported rates of use of traditional and complementary medicines (T&CM) by Australian cancer patients and cancer survivors and the low numbers of Australian cancer services integrating T&CM. An estimated 65% of Australian cancer patients use at least one form of T&CM. Over half use T&CM in conjunction with conventional cancer therapy. Yet, less than 20% of Australian hospital cancer care facilities provide access to T&CM. This compares to around 70% of UK cancer care facilities offering at least one T&CM therapy. Barriers to developing integrative oncology services include determining an appropriate service model and revenue structure; concerns with ethical and legal issues such as regulations and credentialing; and inadequate high-quality scientific evidence demonstrating safety and effectiveness, including concerns about the possibility of adversely affecting chemotherapy or radiotherapy treatment. This paper aims to provide general guidance and practical strategies for those seeking to develop integrative oncology services in Australian cancer care facilities.
- Research Article
2
- 10.1108/ijhrh-09-2014-0022
- Jun 15, 2015
- International Journal of Human Rights in Healthcare
Purpose– The purpose of this paper is to examine doctor-patient communication, focusing on ethnic Australian urological cancer patients.Design/methodology/approach– Samples of 50 Australian urological cancer patients of ethnic origin were chosen to participate in this study. The patients completed a 31-question survey, followed by a one-on-one semi-structured 30-40-minute interview with the patient.Findings– Most (90 per cent,n=45) of the patients indicated that they can communicate with their doctor without feeling stereotyped or judged. However, despite these responses 48 per cent (n=24) of the patients reported they did not ask for the doctor to explain the medical terms or meanings they did not understand. This resulted in 46 per cent (n=23) of the patients not knowing the stage of their cancer.Research limitations/implications– This is only a pilot study and the sample was limited to 50 patients. The limitations of this study make the results of the findings more suggestive rather than definitive. Further research would benefit by repeating this study with a larger sample size, to address the shortcomings of the study and to venture further into the realm of doctor and overseas patients communication in Australia.Practical implications– This research found that patients from lower socioeconomic backgrounds for whom English is not their first language have low levels of medical literacy and therefore require additional written information about their illness and treatment such as informative brochures, educational booklets and educational videos on their illness.Originality/value– To the knowledge, this is the first study that focuses on ethnic Australian urological cancer patients and their doctor-patient communication.
- Research Article
1
- 10.3390/cancers18010003
- Dec 19, 2025
- Cancers
Background/Objectives: Financial toxicity (FT) refers to the financial burden directly or indirectly caused by a patient's medical care. Patients with head and neck cancer (HNC) are particularly vulnerable to FT due to lower rates of return to work and higher out-of-pocket payments (OOPP). In this cross-sectional study, we assessed the amount and types of OOPP, as well as the prevalence of FT, in HNC patients who had completed curative radiotherapy. Methods: We included HNC patients who underwent curative-intent radiotherapy at four private clinics in Romania, within 12 months of completing treatment. Participants completed a 25-item questionnaire capturing sociodemographic information, insurance status, income, and OOPP. To assess subjective FT, we used the validated nine-item Financial Index of Toxicity (FIT), which measures three FT domains: financial stress, financial strain, and lost productivity. Each domain and the total score range from 0 to 100, with higher scores indicating greater financial toxicity. Descriptive statistics were used to summarize patient characteristics. Pearson's chi-square, t-tests, and one-way ANOVA were used to assess statistical associations, with a significance threshold of p < 0.05. Results: Among 113 patients (mean age: 59), the majority were male (74.3%) and married (74.3%), with 40% having completed university or higher education. The most frequent tumor sites were the oropharynx (29 cases), larynx (22), and oral cavity (21). Concurrent chemoradiation was the most common treatment modality (47%). The mean total FT score was 18.8. Overall, 39.8% of patients experienced financial toxicity, and 29.2% scored above the mean in financial stress. Moderate financial strain (score > 21) was reported by 39.8% of participants, and approximately one-third reported loss of productivity. Transportation and nutritional supplements were the most common OOPP categories. Notably, 42% of patients spent at least 400 euros-equivalent to Romania's monthly minimum income-on transportation during radiotherapy. FT was significantly associated with employment and marital status, but not with tumor site or treatment type. Conclusions: Among Romanian HNC patients treated with curative radiotherapy, we found substantial OOPP, particularly for transportation and nutritional supplements. While overall FT levels were moderate, divorced patients and those retired due to other chronic conditions were the most vulnerable to financial distress. Financial toxicity can directly affect treatment adherence, survival, and quality of life. By integrating financial counseling, social support, and broader coverage of treatment-related expenses, healthcare systems can mitigate FT for these patients.
- Research Article
- 10.1016/s0090-8258(22)01734-6
- Aug 1, 2022
- Gynecologic Oncology
Factors associated with increased financial toxicity after the completion of radiation treatment for gynecologic cancer (512)
- Research Article
- 10.1002/cam4.71256
- Nov 1, 2025
- Cancer Medicine
ABSTRACTObjectiveTo investigate the mediating role of financial toxicity in the relationship between perceived social support and negative emotions among post‐surgical lung cancer patients in China.MethodsA total of 447 lung cancer patients from China were recruited, participants completed the Comprehensive Scores for Financial Toxicity (COST), the Negative Emotion Screening Scale (NESS), and the Perceived Social Support Scale (PSSS). The hypothesized relations were explored using structural equation modeling via the bootstrapping approach. The study methods were compliant with the STROBE checklist.ResultsNearly half (42.51%, n = 190) of the participants experienced financial toxicity. Negative emotions were negatively associated with perceived social support (r = −0.13) and negatively associated with financial toxicity scores (r = −0.50) (Note: COST is a reverse scoring scale, lower COST scores illustrate severe financial toxicity). Perceived social support was positively correlated with financial toxicity scores (r = 0.26). Financial toxicity scores negatively predicted negative emotions (β = −0.504). Social support and financial toxicity could explain 25.3% of the variance in patients' negative emotions. Social support positively predicted financial toxicity (β = 0.257) and explained 6.60% of the variance in financial toxicity. Furthermore, financial toxicity completely mediated the association between perceived social support and negative emotions (b = −0.124; 95% confidence interval: −0.182, −0.086).ConclusionThe high prevalence of financial toxicity demonstrates its crucial role in patient outcomes. Our findings reveal that social support indirectly influences negative emotions through financial toxicity, establishing a clear pathway linking psychosocial and financial aspects of cancer care. These results suggest that integrated interventions targeting both financial burden and social support networks may be particularly effective in improving psychological outcomes among lung cancer patients in China's high‐middle income regions. Future healthcare policies should prioritize comprehensive support systems that address this complex interplay of socioeconomic and psychological factors.
- Research Article
1
- 10.1002/cam4.71083
- Jul 25, 2025
- Cancer medicine
Cancer patients experience severe financial toxicity, with the mechanisms influencing the relationship between socioeconomic status and financial toxicity in lung cancer patients remaining poorly defined. This study aims to investigate how social support and self-efficacy mediate the association between socioeconomic status and financial toxicity among lung cancer patients in China. A survey of 755 lung cancer patients was conducted at a tertiary oncology hospital in Shandong Province, China, from October to December 2023, utilizing random sampling. Data collection included demographic and socioeconomic details, along with assessments of social support, self-efficacy, and financial toxicity. Regression and Bootstrap analyses were used to explore the sequential mediating effects of socioeconomic status, self-efficacy, social support, and financial toxicity. (1) Significant correlations emerged among socioeconomic status, social support, self-efficacy, and financial toxicity (p < 0.05). (2) Socioeconomic status was significantly associated with financial toxicity (p < 0.05). (3) Self-efficacy mediated the relationship between socioeconomic status and financial toxicity (β = 0.203, p < 0.05), whereas social support did not exhibit a mediating effect in this relationship (β = 0.039, p = 0.194). (4) Social support and self-efficacy had a chain-mediated role in the relationship between socioeconomic status and financial toxicity in patients with multimorbidity (β = 0.072, p < 0.05). This study identifies social support and self-efficacy as chained mediators that link socioeconomic status with financial toxicity among lung cancer patients. It is recommended that targeted interventions be implemented to increase social support for patients with lower socioeconomic status to mitigate financial toxicity.
- News Article
- 10.1002/cncr.31990
- Jan 30, 2019
- Cancer
Financial distress, also known as financial toxicity, is a major concern for both patients with metastatic breast cancer and older patients with cancer according to studies presented at the American Society of Clinical Oncology’s Quality Care Symposium in September 2018. In one analysis, researchers from the University of North Carolina Lineberger Comprehensive Cancer Center surveyed 1054 patients with metastatic breast cancer from 41 states, approximately one-third of whom were uninsured. Patients in the uninsured group were more likely to identify as a racial or ethnic minority, have a lower income, and work full-time. Compared with the insured study participants, they were more likely to refuse or delay a treatment because of its cost (96% vs 36%) and more often reported being contacted by a collection agency (92% vs 30%). Other hardships that uninsured participants were more likely to experience included the inability to meet monthly expenses and not feeling in control of their financial situation. However, researchers found that having health insurance did not necessarily shield patients from the psychological impact of high cancer costs. fte insured group reported having greater emotional distress related to disease costs, including feeling “quite a bit” or “very” stressed about not knowing treatment costs (41% vs 24%) and feeling that a greater amount of financial stress had been put on their families because of their disease (36% vs 19%). Although clinicians do not have control over treatment costs, researchers say that the findings can provide guidance in helping patients to cope with financial burdens and associated stress brought on by high medical bills. A separate study, led by investigators at the University of Rochester, found that 18% of older patients with advanced cancer experienced financial difficulties that negatively affected their care, quality of life, and mental health. Researchers surveyed 542 patients aged 70 to 96 years nationwide. Because financial toxicity lacks a standardized definition, they used a simple screening tool to categorize patients. Seniors were reported to have experienced financial toxicity if they answered yes to 1 of 3 questions: had they ever delayed medications for cost reasons, did they have insufficient income for food and housing in a typical month, and did they have insufficient income for other basic needs. Older patients, investigators noted, are more frequently diagnosed with cancer and often face the additional burden of limited incomes. Compared with those without financial hardships, older patients grappling with financial toxicity were found to have a higher prevalence of severe anxiety (18% vs 7%), a higher prevalence of depression (27% vs 21%), and a higher prevalence of poor quality of life (41% vs 22%). Moreover, for patients who met the criteria for financial toxicity, cost issues were brought up just about half the time by their clinicians. Researchers hope that the study will help oncologists to ask specific questions of their patients in order to connect them with social workers or financial specialists for help.
- Research Article
10
- 10.1097/ju.0000000000002897
- Nov 1, 2022
- Journal of Urology
Financial Toxicity After Robot-Assisted Radical Prostatectomy and Its Relation with Oncologic, Functional Outcomes.
- Research Article
26
- 10.1200/op.22.00350
- Nov 15, 2022
- JCO Oncology Practice
Financial toxicity is a well-recognized problem for patients with cancer. However, a crucial gap remains in describing and implementing mitigation strategies. We conducted a national survey of a multiethnic adolescent/pediatric and adult patient population served by Family Reach, a nonprofit organization focused on removing financial barriers to cancer care, to evaluate the impact of a comprehensive financial resource on patient-reported financial toxicity. An electronic survey was administered to characterize patients' current financial health and the impact of Family Reach's resources on financial toxicity. The survey was e-mailed to all patients or caregivers who received resources from Family Reach between January 1, 2020, and June 30, 2020. Factors associated with higher financial stress and higher potential impact of resources on financial burden were evaluated through separate multivariate regression models. Qualitative responses were analyzed using manual coding and thematic analysis. Three hundred thirty socioeconomically and racially diverse respondents (overall response rate 40%; 46% non-Hispanic White; 48% with incomes below the federal poverty line) completed the survey and were included in the analysis. More than half of respondents reported high financial stress in the previous week. Hispanic ethnicity, Black race, and low annual household income were associated with higher financial toxicity. A greater amount of financial assistance was associated with a higher confidence rating that resources provided would decrease financial stress. In open-ended comments, respondents highlighted the impact of the COVID-19 pandemic and resulting job loss on financial toxicity, the importance of financial navigation, the benefits of financial assistance, and anxiety about long-term financial health. A comprehensive financial resource, particularly financial assistance, alleviated financial toxicity in a multiethnic national sample of patients with cancer. Ongoing work is critical to address sustainable funding sources and financial navigation to support patients during treatment and survivorship.
- Research Article
- 10.1097/ju.0000000000002549.11
- May 1, 2022
- Journal of Urology
MP16-11 VALIDATION OF A SINGLE ITEM SCREENING MEASURE OF UROLOGIC PATIENT FINANCIAL DISTRESS
- Research Article
- 10.1016/j.jcpo.2025.100658
- Dec 1, 2025
- Journal of cancer policy
Global emerging trends and correlation of financial toxicity in cancer care: A bibliographic review (2013-2024).