Physician-patient communication of costs and financial burden of cancer and its treatment: a systematic review of clinical guidelines

In the United States, the estimated national expenditure on cancer care in 2017 was $147.3 billion [1], and this is projected to increase with an ageing population and rise in cancer prevalence. Additionally, the advent of personalised medicine and availability of newer therapies come at increasing costs, especially as many are prescribed lifelong. As healthcare costs for cancer are higher than for other conditions [2], discussions regarding expenses are relevant and necessary to allow timely interventions that reduce the risk of financial burden. ‘Financial toxicity’, or treatment-related financial harm of cancer care has been reported in up to one in four patients with cancer [3]. This can have unintended consequences due to patients’ attempts to reduce costs by non-adherence to medication and missing healthcare appointments [4, 5]. Patients who reported higher self-rated financial burden had poorer cancer outcomes, lower quality-of-life scores, and less satisfaction with care [6].

Recognition of cancer-related financial burden has led to initiatives towards improving price transparency and value-based care in the clinical setting. In recent years, medical organisations from many countries, have recommended greater transparency about the costs of treatment. The American College of Physicians and the Australian Medical Association, both recommend that financial consent be a part of clinical care of patients [7‐9]. The American Society of Clinical Oncology’s Guidance Statement on the Cost of Cancer Care [10] recommends ‘patient-physician discussions regarding the cost of care are an important component of high-quality care’. Health care providers, especially oncologists, have a greater responsibility to include discussion of costs in their communication with patients.

Enhanced patient-physician communication may heighten physicians’ awareness of financial issues and thereby help ensure patients are prescribed the most cost-effective medicines [7]. Physicians can also play a key role in educating patients to make appropriate and affordable decisions regarding their out-of-pocket costs.

A review of patient-physician costs communication indicated that the majority of patients wanted to discuss costs with their oncologists [11‐13] and most physicians felt it was their responsibility. However, financial issues were not frequently addressed, and more than 70% of oncologists felt uncomfortable with such communication [14], largely due to lack of appropriate information to facilitate the discussion. Additionally, patients commonly deferred cost discussions with their oncologist until they were already experiencing financial burden [4]. However, when patients did talk about costs with their clinician, it led to lower out-of-pocket costs [15]. Clinical practice guidelines can assist physician education to direct discussions of costs and management of financial burden.

Therefore, we conducted a systematic review of published clinical practice guidelines to identify information available to oncologists regarding the discussion of costs; and the detection and management of financial burden. The motivating goal for this review was to provide a summary of existing guidelines about the discussion of costs and management of financial burden in cancer care. In addition, the review would identify gaps in the information available to guide future research and guideline development.

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) [16] checklist was used to guide this review.

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 [49].

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’ [50] has been proposed to increase price transparency and inform patients about costs of care before they make informed health care decisions. Out-of-pocket costs and rates of financial burden remain high in countries with universal health care, such as Australia, Canada, United Kingdom and countries in the European Union [51, 52]. In Australia, the Department of Health released a report supporting informed financial consent (IFC) [53], 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 [7].

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 [54].

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 [55, 56]. 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.

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 [57]. 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 (See Table 3). 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.

Current clinical practice guidelines have limited information to guide discussions about the costs of anticancer treatment and the management of financial burden. This limits the ability of patients to control the costs of their cancer management, and of the healthcare team to reduce the incidence and severity of financial burden.