Optimising the care of patients in a financially responsible way is increasingly important in the current era of cancer care. Cancer treatment costs can influence treatment decisions by patients, and subsequently, can affect patient outcomes (46).
The issue of addressing price transparency is global and important in all healthcare systems, including those in countries with universal health care coverage. In the United States, the ‘Executive Order on Improving Price and Quality Transparency in American Healthcare to Put Patients First’ (47) has been proposed to increase price transparency and inform patients about costs of care before they make informed health care decisions. In Australia, the Department of Health released a report supporting informed financial consent (IFC)(48), and education for consumers and specialists regarding the costs of healthcare. The Australian Medical Association and specialist colleges have also supported IFC and the provision to patients of information about medical fees (49).
Research also shows that interventions to address ‘pricing failure’, i.e., non-disclosure of prices to patients, can reduce waste in healthcare. It has been estimated that greater transparency about pricing for office and laboratory visits in the US could result in healthcare savings of $29 billion USD (50).
Limited information is contained in the guidelines for oncologists; however, there are some key recommendations that appear consistently: 1. Clinician awareness of price variability between treatment options, insurance coverage and geographical regions; 2. Screening for financial stress as a cause of psychological distress, especially in high risk groups such as low socioeconomic status populations and ethnic minority groups; 3. Referral to practical supports and services to alleviate financial burden.
The findings of our systematic review reveal a paucity of information for clinicians about communication regarding the costs of treatment, recognition of financial burden, and the management of patients’ financial burden. Most guidelines recommended costs be considered and discussed. However, there was little information to guide these discussions in the clinical setting. In addition, although there were recommendations to refer patients to support services, there was limited information about how or where to find these support services.
Clinicians have described multiple barriers to discussing costs, primarily time constraints and perceived absence of viable solutions if costs are a concern (51, 52). Provision of information regarding costs and support services within guidelines may reduce these barriers and facilitate the discussion in the clinical setting. In addition, incorporation of multi-disciplinary team members such as nurses, social workers, counsellors, and pharmacists as referral services for patients to discuss costs and financial concerns may assist management. An outline of questions that providers can consider asking their patients during the initial and follow-up consultations is provided in Table 2.
Table 2
A guide for clinicians to improve cost communication
Time | Costs of care | Financial burden |
---|
At initial appointment | ● Discuss options of therapy, with estimates of costs ● Provide information on fees to attend services, e.g., healthcare appointments, hospital services | ● Discuss patient employment, insurance coverage and household income status ● Suggest local and national support services if available ● Consider early introduction to financial navigator to develop a financial plan |
At follow-up appointments | ● Discuss costs of treatment when prescribing new therapies ● Discuss ability to afford current prescribed therapy ● Assess for presence of cost-saving strategies, e.g., skipping doses or appointments | ● Screen for presence of psychosocial issues arising from financial burden ● Explore ability to work and patient’s support network ● Consider referral to financial navigator or counsellor |
This is the first systematic review about information regarding costs of cancer care in published clinical practice guidelines. The literature review included international guidelines with no language restrictions to ensure the generalisability of our findings. We undertook a comprehensive search of guideline databases, including manual searches. These results are particularly valuable for health care professionals caring for patients with cancer, especially oncologists and cancer nurses. They will be of special consideration to cancer societies and organisations that develop and publish these guidelines.
One limitation of our review is that we restricted it to guidelines about the management of advanced cancers. This is not meant to downplay the considerable financial burden faced by survivors of cancer treated with curative intent, which may also have long-term effects on wellbeing. High medical costs have been reported to cause psychological distress in 34% of cancer survivors, and disproportionately affect those without insurance (53). Our decision to include only guidelines relating to the management of advanced cancer was to keep the recommendations regarding costs and financial burden consistent with changes in employment and work status. These changes are more likely to be permanent in people with advanced cancers.
Our review demonstrates that there is limited information to guide clinicians on how to discuss the costs and financial impact of cancer treatment with their patients. The study identifies gaps in recommendations and resources that should be used to guide future research and development of guidelines to make this information accessible to clinicians. Future guidelines should contain more information about the optimal timing, frequency, and content of these discussions. In addition, future guidelines should include more advice on how oncologists should explain the costs of care accurately and transparently, along with suggestions to reduce financial burden.
Our review demonstrates a scarcity of information and guidelines from other major cancer networks and countries where the rising costs of cancer therapy are becoming an increasing problem. This review highlights findings from primary studies indicating that starting conversations early about the costs of cancer and its treatment may provide patients with a greater sense of control over their management, and reduce both the incidence and severity of financial burden.
Clinical practice guidelines for discussion about cancer costs could be improved by: first, providing costs estimates to clinicians to enable the discussion of treatment options with patients; second, providing information to clinicians about how to identify individuals at high risk of developing financial burden; and third, discussing strategies and options for management of financial burden, including the provision of details of support services. Further research is needed to assess the acceptability and feasibility of clinician-initiated cost discussions in the clinic setting. Further studies on the facilitators and barriers of communication about costs will allow the development of improved guidelines and increase clinician uptake of the recommendations.