Ian Olver, Director Sansom Institute for Health Research, University of South Australia for oncologynews.com.au
Financial toxicity is an emerging term used to describe the unintended economic harm suffered because of cancer treatment. Should it be characterised as a toxicity? It has an objective burden but also results in subjective distress which reduces the quality of life and can compromise treatment choices and worsen cancer outcomes. It not only impacts the patient but also their household.
The major causes of the loss of income or assets with cancer and its treatment are job loss or reduction in employment and the cost of treatment, particularly if patients must self-fund high-cost anticancer treatments. Financial toxicity may be worse if the patient is the major income earner for the family, if there is debt before the diagnosis of cancer or if the patient has no health or income protection insurance. Scales have been developed which record the financial burden of cancer based on the ability to pay.
Financial distress is the reaction to the reduction in personal finances. Studies from the United States show that the prevalence of financial distress ranges between 22.5% in general to 64% in cancer survivors of working age. A validated scale, the Comprehensive Score for Financial Toxicity (COST) has been developed by de Souza and colleagues and this encompasses both the objective and subjective components. Gradings of zero, mild, moderate and severe correlated with health-related quality of life and the higher grades have been found to correlate with a higher incidence of declaring bankruptcy.
Studies reporting self-perceived financial distress in patients with cancer show that the burden is greater in younger patients, those with lower income, poorer health, receiving more treatment, suffering anxiety and depression or belonging to marginalised groups. To mitigate the burden, they reduce their spending on clothing, food, social activities and leisure, but also they reduce their spending on their healthcare. This often involves not purchasing medications or for rural patients under-reporting side effects to avoid travelling long distances to seek medical advice. Other strategies include borrowing money or simply defaulting in paying bills.
People surviving cancer are 1.4 times more likely to be unemployed than matched controls, and 30% of cancer survivors have not returned to work within 5 years of their diagnosis. It is estimated than 70% of cancer patients have a 50% drop in income, largely related to changes in their employment status. Moreover, the out of pocket medical costs for those under 65 years is reported as being 3 times higher than for people with other chronic diseases.
Despite the burden of financial toxicity, patients can be reluctant to discuss this with their doctors. In one study 51% of patients with solid tumours wanted their doctor to take costs into account but only 19% had spoken to their doctor about it. When they did reveal their struggle, it resulted in 57% having lower out of pocket expenses. Just over half of the patients did not have financial difficulty affording healthcare, a third wanted the best care irrespective of cost, but 23% thought that the doctor should not have to worry about their finances and 19% believed that the doctor would not be able to help.
Perhaps an unexpected consequence of financial toxicity was a negative influence on participation in clinical trials. This was thought to be due to lower self-efficacy associated with greater financial distress and thereby greater decisional conflict and distress in decision-making.
As previously mentioned, financial distress also impacts upon family and carers. A study of carers of patients with lung cancer demonstrated the choices that they made. Forty-five percent of carers had reduced their working hours and 18% had quit their jobs. Perhaps more problematic was that in 22% of cases medical care was delayed for other family members.
The magnitude of the financial toxicity problem underscores the need to be rigorous about the value of treatments offered to patients with cancer to ensure that the clinical benefit justifies the expenditure. Organisations such as the American Society of Clinical Oncology (ASCO) and the European Society of Medical Oncology (ESMO) have produced clinical benefit evaluation scales to aid in this process when discussing potential treatments with patients.
Being able to determine what interventions will help alleviate financial toxicity is very important. At the American Society of Clinical Oncology meeting in Chicago in June 2017 De Souza and colleagues assessed a number strategies including co-payment assistance, transport vouchers, use of patient navigators, social workers, financial counsellors and support groups. They found that measurable improvement in financial toxicity as measured by COST and health related quality of life as measured by FACT-G only occurred with the financial co-payment intervention. Financial toxicity remains a fruitful area for further research.