Overview: Cost of cancer to the patient

Nikki McCaffrey

Impact of financial costs of cancer on patients – the Australian experience

Christine L Paul, Elizabeth A Fradgley, Della Roach, Hannah Baird

Although healthcare in Australia is largely publicly funded, there are out-of-pocket costs associated with diagnosis, treatment and survival, even in the public system. In Australia, people with cancer report relatively high out-of-pocket health costs and a heavy burden of out-of-pocket costs relative to income. These costs include travel, hospital stays, specialist fees, parking, treatment prescriptions and over-the-counter medications for supportive care. The financial impacts of the disease extend to reduced or lost employment, early retirement and reduced incomes. The financial costs of cancer in Australia are also unequally distributed in that some cancer types are more costly to the individual. Those living in rural and remote areas also face greater out-of-pocket costs, as do those who use the private health system. Cancer-related costs are not restricted to those experiencing a diagnosis of cancer, but also extend to carers and families and can be enduring. While reducing costs is an important long-term goal, ameliorating financial impacts is also important in the short term. The heavy burden associated with cancer may be reduced if the expected costs of treatment and the availability of assistance become part of treatment conversations and processes.

Regulatory and government funding agency consideration of monetary costs to the cancer patient

Camille Schubert 

The Australian healthcare system aims to provide accessible healthcare to all citizens, and on a global scale it appears to achieve good health outcomes, with relative efficiency. However, the system is complex and despite various public funding programs, numerous out-of-pocket expenses to patients remain; in cancer patients these are estimated to be significant. The types of costs associated with healthcare are described here, as are the main public healthcare funding schemes in Australia. Decision-makers for these schemes do request information regarding patient costs in economic analyses, however the extent to which cost data are available is limited. Generally and primarily for the practical reasons – but sometimes with a philosophical consideration – only limited information on patient healthcare-related costs will have been considered before a funding recommendation is made. There is a concern that without increased consideration of patient costs, the existing network of public funding schemes in Australia may not adequately ensure the affordability of healthcare.

Cost of informal caregiving in cancer care

Afaf Girgis and Sylvie Lambert

In 2015, approximately 2.7 million Australians were unpaid caregivers, including partners, family members, friends and neighbours. However, the true population of Australian caregivers may be under-estimated due to lack of carer self-identification, and this may be even more so for Australians of culturally and linguistically diverse backgrounds and Aboriginal and Torres Strait Islanders. Increasing cancer incidence and survival has resulted in a corresponding increase in the demand for unpaid caregivers, prompting in-depth exploration of the economic, psychosocial and physical impact of caring. Caregivers’ physical health is significantly impacted and is sometimes reported to be lower than the patients they care for, perhaps as a consequence of prioritising the patient’s needs and health over their own. Caregivers are also at increased risk of poorer psychological outcomes than the general population, reporting high levels of depression and anxiety. The financial impact is significant, with informal caregiving representing 18-33% of the total financial cost of cancer. The burden of this financial responsibility can adversely impact caregivers’ quality of life, limiting their capacity to fulfil other caregiving roles and also having a direct adverse impact on the patients’ quality of life. This paper reviews the costs of caregiving, from a financial, physical and psychosocial perspective.

Measurement of resource utilisation in cancer clinical studies – tools, issues and challenges

Sophy TF Shih and Rob Carter

Inclusion of economic evaluations alongside cancer clinical trials necessitates the collection and analysis of resource utilisation and cost data alongside outcomes. The purpose of this paper is to describe and discuss the measurement of cost in clinical studies, particularly resource utilisation. Cost data collection can be conducted retrospectively through linkage of treatment data with claims data, such as Medicare, or by patient recall (questionnaires). Prospective approaches include the patient diary. Measures and data collection tools are usually modified by researchers to fit the purpose and target population of their specific study. There is strong agreement on the inclusion of direct medical and non-medical costs in economic evaluations. The balance of opinion is that inclusion of indirect costs is appropriate; but agreement on exactly ‘which indirect costs’ and in ‘what context’ differs. However, narrow study perspectives mean that inter-sectoral resources are often overlooked. In addition to the two cancer-specific instruments included in the Database of Instruments for Resource-Use Measurement, there are numerous resource utilisation measurement tools used in a broad range of clinical research with heterogeneous intervention characteristics and outcome measures. Despite this, very few studies report validated cost/resource use instruments. Further, many cost analyses ignore long-term care costs, non-medical costs borne by patients and important costs incurred in other sectors, such as social services. There is no ‘gold standard’ for resource utilisation instruments and the agenda for future research is lengthy. For example, many issues such as recall length, accuracy in recall of medical terms and medicines, specificity versus comprehensiveness of the instrument and missing data, remain to be addressed. Innovation in mobile technology will likely revolutionise data collection and may overcome many of the existing barriers to robust measurement of resource utilisation for cancer clinical trials and improve societal decision making.

Financial toxicity – what it is and how to measure it

Louisa G Gordon, Katharina MD Merollini, Anthony Lowe, Raymond J Chan

The term ‘financial toxicity’ is broadly used to describe the distress or hardship arising from the financial burden of cancer treatment. In much the same way as physical side-effects of treatment like fatigue, nausea or blood toxicities, financial problems after cancer diagnosis are a major contributor to poorer quality of life, treatment non-adherence and delayed medical care. This article describes what financial toxicity is, how it is measured, how common it is and what the implications are for further research and clinical practice. A recent review shows a wide range of measures used to describe the financial burden of cancer. Using monetary measures, the magnitude of financial stress was between 28-48% in cancer populations. Possible solutions to reduce the family financial burden include mandating full disclosure of doctors’ fees and charges related to treatment and strategies to empower patients to improve their treatment decision making.  Furthermore, screening tools such as the COST-FACIT 11-item survey may assist health professionals to identify those patients at high risk of financial stress and refer them to support services. Minimising financial stress is important for patients and measuring financial toxicity helps to expose flaws in health systems and subsequently ensure that citizens receive quality cancer care.

Unemployment after cancer – a hidden driver of financial toxicity

Bogda Koczwara

While financial toxicity due to the high costs of cancer treatment is increasingly recognised as a significant challenge for cancer patients and survivors, the impact of reduced work participation as a major driver of financial toxicity is only just coming to light. Unemployment and reduced employment after a cancer diagnosis is associated with reduced financial reserves, impaired quality of life, and possibly reduced survival. Loss of work after cancer disproportionally impacts on those already more vulnerable, such as low income employees and the very young, with impact persisting for some for many years. Research needs to focus on quantifying and predicting the impact of reduced work participation on quality and quantity of survival, and development of interventions to assist with meaningful work participation for cancer survivors. 

Concerns about cost of future medical care as a factor in advance care planning: Review and agenda for future research

Timothy R Ford, Robin C Cummings, J Brian Cassel

This review explores the evidence for a relationship between healthcare related financial concerns and advance care planning. Large-scale surveys of public opinion in the US have found that people perceive the financial domain to be an important aspect of quality of life and a major concern regarding end-of-life care, and qualitative research has found that financial worries have been found to be a distinct domain of patients’ self-perceived burden on their family. Concerns about being a burden on others have some influence on treatment decisions and advance care planning. Healthcare related financial concerns have some basis in fact, as consumers’ out-of-pocket costs continue to escalate in some countries. Further research is warranted about healthcare related financial concern and its impact on motivation for engaging in advance care planning, and the content of those plans. A conceptual model of the relationship is proposed to guide further research. This includes three sets of variables: person characteristics such as health literacy, marital/family status and health state; the trait or state of healthcare related financial concern; and behavioral outcomes such as advance care planning and treatment decisions.

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