How, When, and With Whom Should Cost of Care Conversations Occur? Preferences of Two Distinct Cancer Survivor Groups

Abstract

PURPOSE:

Cost of care (CoC) conversations should occur routinely in oncology practice. However, patient preferences about with whom, when, and how to have these conversations are missing and preferences may vary across patient populations.

METHODS:

We performed a secondary qualitative analysis of quotes from interviews with 28 cancer survivors from two health care settings (Kaiser Permanente Washington and O’Neal Comprehensive Cancer Center at University of Alabama at Birmingham [UABCCC]). A targeted approach searched for three constructs: (1) Who should have CoC conversations with patients? (2) When should CoC conversations occur? and (3) How should CoC conversations happen?

RESULTS:

Interviewees were similar in age and education, but UABCCC participants had more racial/ethnic minority representation and financial distress. Within each construct, themes were similar across both groups. As to who should have CoC conversations, we found that (1) providers’ main role is medical care, not CoC; and (2) care team staff members are a more appropriate choice to address CoC needs. About the question of when, we found that (3) individuals have strong convictions about when and if they want to discuss CoC; and (4) CoC information and resources need to be available when patients are ready. About the question of how, themes were (5) provide estimates of anticipated out-of-pocket costs and insurance coverage; (6) provide reassurance, sympathy, and concrete solutions; and (7) because of their sensitivity, conduct CoC conversations in a comfortable, private space.

CONCLUSION:

These findings offer general guidance as to who should conduct CoC conversations and when and how they should occur, with applicability across different patient populations.

INTRODUCTION

Discussing cost of care (CoC) with patients with cancer is a recommended component of quality care.¹ However, CoC conversations do not occur routinely,^2-4 and many barriers, such as providers’ lack of knowledge about or time to address costs and perceived patients’ embarrassment or reluctance to discuss costs, prevent incorporating these conversations into practice.^5,6 Currently, there is no specific guidance about how to overcome these barriers or about who, when, and how is most appropriate and effective to initiate and conduct CoC conversations in oncology practices. Previously, we identified the essential elements of CoC conversations in one oncology setting; these included a reassurance and action framework.⁷ Specifically, patients desired reassurance that CoC would not negatively affect receipt of quality care and an action plan with tangible options, such as securing payment plans or accessing financial assistance programs. We also elicited patient preferences regarding the practical logistics of CoC conversations, including format, content, timing, and providers with whom to have these conversations.⁷ However, these preferences may vary across patient populations and the health systems in which they receive care: thus, whether the logistics of CoC conversations should be the same across oncology settings is largely unknown.

To begin addressing this knowledge gap, we present findings from qualitative interviews with diverse cancer survivors who received care in different clinical settings and geographic regions.^8,9 Specifically, we aimed to explore the unique preferences about who in the clinic should discuss CoC with patients, when along the disease and treatment trajectory CoC conversations should occur, and how the conversations should be conducted (ie, preferences for content and flow).

METHODS

We conducted a secondary qualitative analysis of interviews with cancer survivors from two separate research studies that investigated CoC conversations within distinct health care settings.^8,9 The goal of the parent studies was to assess the experiences and perspectives of patients and health care staff regarding CoC conversations within clinical settings. These studies were approved by the institutional review board (IRB) at Kaiser Permanente Washington (KPWA) and at the University of Alabama at Birmingham (UAB). The current secondary analysis was approved by the KPWA IRB and was considered exempt research by the UAB IRB.

Participants and Study Procedures

We included interviews with (1) individuals with cancer who had received chemotherapy treatment in the previous 12 months at KPWA⁹ and (2) breast cancer survivors who had received chemotherapy treatment (within 5 years of the interview) at the O’Neal Comprehensive Cancer Center at UAB (UABCCC).⁸ Interviews with health care team members at KPWA and UABCCC, and interviews with survivors who did not receive chemotherapy at UABCCC, were not included. Recruitment and interview procedures are reported in detail elsewhere.^8,9 Table 1 summarizes the differences in study settings and procedures. Briefly, KPWA participants were identified through the electronic health record and interviewed in their home by two interviewers. Using a semistructured interview guide, participants reviewed three scenarios of patient experiences related to CoC and were asked questions about their experiences in managing their costs of cancer care, their preferences about the role of physicians and other clinical staff in seeking CoC information and conducting CoC conversations, and their privacy concerns related to CoC conversations. Interviews lasted approximately 1.5 hours. UABCCC participants were recruited from the hospital registry and attended in-person interviews in a UAB nonmedical setting. After a semistructured interview guide, participants were invited to comment on CoC information flyers that included out-of-pocket cost information and were then asked to respond to questions about their preferences for CoC conversations. In particular, they were asked about their preferred content and timing of the CoC conversation and their preferred medical provider or other staff to have the conversation with. The interview lasted approximately 1 hour.

TABLE 1.

Characteristics of Study Settings and Procedures

Analysis

Interviews from both studies had previously been transcribed verbatim, and transcripts were analyzed using content analysis methods.¹⁰ For the current study, the KPWA and UABCCC data sets of participants’ quotes were used to describe relevant preferences in the two samples. Three investigators (N.B.H., L.T., M.P.B.) reinvestigated the KPWA data set and analyzed all interview data with a targeted search approach for constructs of interest. Two investigators (M.P., M.I.L.) went through a similar process with the UABCCC data set. The constructs of interest were as follows:

1. Who should have CoC conversations with patients? We selected any quotes in which participants indicated whether physicians, nurses, or other health care team personnel should or should not have cost conversations with patients.

2. When should CoC conversations occur? We selected quotes in which participants indicated when it would or would not be appropriate to have these conversations.

3. How should the CoC conversations happen? We selected quotes about what should or should not be discussed, as well as how CoC discussions should or should not be delivered.

We first report the demographic characteristics of the two participant populations. We then present relevant quotes side by side and identify common and divergent themes. Given the small sample size for each study and the differing interview guides, we did not attempt to count or assign relative importance to the themes. We analyzed the collective findings from both data sets through a series of analysis meetings, working via consensus to put the relevant results into meaningful descriptive categories (themes). We identified illustrative quotes for each construct’s themes from both data sets.

RESULTS

Our analysis included 10 KPWA and 18 UABCCC cancer survivors: their characteristics are summarized in Table 2. The mean age was above 60 years old; however, 20% of KPWA participants and 83% of UABCCC participants were under the age of 64 years. KPWA and UABCC participants differed in racial/ethnic minority representation, but they were similar in terms of education. No KPWA participant found it difficult to get by financially, and 40% reported just getting by financially. In contrast, approximately 30% of UABCCC participants indicated that their income was not enough to meet their basic needs, and 33% reported being quite a bit/very much financially stressed.

TABLE 2.

Sample Characteristics

Overall, we did not find significant differences in the responses between participants by study site. The emergent themes within the three constructs are presented below.

Construct 1: Who Should Have CoC Conversations With Patients?

Theme 1: Participants felt that the provider’s main role was medical care, not also addressing CoC concerns.

Participants wanted physicians and nurses to “focus on treating the cancer” or on helping the patients get better (Table 3). Limited physician time was frequently cited as an issue in both populations. Infrequently, participants mentioned the idea of a potential conflict of interest, as one participant stated, “[Physicians] want to stay separated from that. Because they’re the ones prescribing the thing.”

TABLE 3.

Illustrative Quotes for Three Constructs of Interest: Who Should Conduct CoC Conversations and When and How Should They Occur?

However, the idea of zero physician involvement did not seem feasible to several patients. KPWA participants in particular mentioned that physicians should help patients choose alternative treatment options. One participant thought that the physician should discuss costs if the preferred treatment was unaffordable: “and then see if there’s any way to reduce those costs if I say that’s an awful lot of money.” Other participants, at both sites, reflected on a role for the physician in inviting cost concerns by proactively raising the issue rather than waiting for the patient to say something (Table 3).

Theme 2: Participants felt that a care team member or other staff member whose main role was addressing cost-related needs was most appropriate.

Participants reflected widely on which team member would be the best one to address costs (Table 3). Pharmacists, nurses, medical assistants, social workers, front desk staff members, and “bookkeepers” were mentioned, with little consensus as to which would be ideal. Rather, there was a united idea of a dedicated team member whose job was helping patients navigate financial resources. Attributes mentioned repeatedly at both study sites included adequate training and knowledge of health insurance benefits and coverage, adequate time to address cost concerns, and continuity of care such that the patient could ask the same person questions over the course of treatment. Given the sensitive nature of discussing financial matters, trust was mentioned: “I think you have to build up a little rapport with people before you just go in and tell them what your financial…I think that’s something that people are very cautious about and they don’t necessarily want to discuss that with everybody. So I think it’s a trust thing also.”

Construct 2: When Should CoC Conversations Occur?

Theme 3: Participants had strong convictions about when and if they want to hear about or discuss CoC.

Most participants believed there was value to receiving cost information but expressed strong opinions about when that should happen (Table 3). At one extreme, participants wanted to know CoC information immediately after a care plan is set, but before treatment starts. They reported a desire to budget, “if I had known what the cost is going to be before all this” and plan “because not everyone can just pull out money and pay it. They need a plan.” Some KPWA participants also pointed out that these conversations could be held before the chemotherapy when they still had a “clear brain.” At the other extreme, participants described feeling too overwhelmed and “not emotionally capable” at diagnosis to hear about costs.

Theme 4: Participants felt that information and resources should be available when they are ready to address costs.

A frequent sentiment was that patients should be made aware that health care team members or resources are accessible and available when they are ready to discuss CoC. As one participant stated, “I think having that spelled out for you at the front end, even though it's a lot to take in, at least then I could go back and reference it when my mind got right.” Some participants addressed preferences for written resources “if I could have it in my hand to take home and think over.” Others preferred a specific person to contact “after you’re faced with the shock of going through all of that and you settle down, then you’ll need to have someone to come and talk about the financial end and what will be covered.”

Construct 3: How Should CoC Conversations Happen?

Theme 5: Clear estimates of anticipated out-of-pocket costs and insurance coverage should be provided.

Many participants acknowledged the benefit of having CoC information available and presented to them to understand what portion of costs would be their out-of-pocket responsibility, “Here's your plan. Here's what you paid today. Here's what you still need to pay.” Furthermore, participants expressed that having cost information presented in a clear, succinct manner was of great importance. KPWA participants also considered that for older populations, cost information should be in print.

Theme 6: The care team should provide reassurance and sympathy and offer concrete solutions.

Several participants expressed that patients may be embarrassed to talk about finances and that the health care team members who are addressing costs should be reassuring and have a “sympathetic and understanding tone.” Participants felt that it was important for the care team to offer concrete solutions. Examples they gave included information about organizations or community resources (ie, Medicare, Medicaid, cancer foundations, other charitable organizations) that would be available.

Theme 7: CoC conversations are sensitive and should be conducted in a comfortable, private, convenient space.

Participants pointed out that CoC conversations should be confidential, and as such, not held in an open space such as the reception desk, but in a private setting in which patients are comfortable and dressed. This setting should not be the examination room, but an office close to that room. One KPWA participant also hinted at the fact that CoC conversations should not be inconvenient, such as requiring an additional trip to the clinic or extra time when at the clinic “If I was planning to be there for an hour and I ended up spending three years, you know, that could be a problem.”

DISCUSSION

In two diverse groups of patients with cancer, we found considerable agreement on several aspects of CoC conversations. Participants wanted to discuss costs they were responsible for in a simple and straightforward manner, at a time of their choosing. Participants wanted these CoC conversations to respect their readiness to receive the information, as well as their vulnerability and privacy. A care team member dedicated to this task was thought to be the most appropriate person to discuss costs and to link patients to available resources when needed. These findings highlight several important considerations for CoC conversations, many of which can be implemented in oncology practices.

One of the strengths of this study is that interviewed cancer survivors were not only from two different health systems and geographic contexts, but also reflected different patient characteristics. The participants from UABCCC were younger and more racially diverse than those at KPWA. According to the 2018 America’s Health Rankings, Washington state ranked ninth and Alabama ranked 48th on a composite measure of health outcomes, access to care, and other health determinants.¹¹ This context was reflected in the differences in financial status reported by the KPWA and UABCCC participants, with more UABCCC participants reporting financial hardship. Accordingly, we expected that patient preferences related to CoC conversations would differ; instead, we found remarkable agreement on preferences for who should conduct these conversations and when and how they should occur. This was somewhat surprising, given previous literature that suggested differences across patient characteristics in preferences for who should conduct CoC conversations. In some studies with young cohorts and a high proportion of men,^3,12,13 and in another with older and sicker patients,¹⁴ participants expressed a preference for discussing costs with their physicians. In other studies, only 20% to 30% wanted oncologists to discuss or consider cost.^15,16 Thus, although the results reported here support the CoC conversation framework and logistics in Pisu et al,⁸ additional studies should examine if indeed preferences for CoC conversations differ in men and younger groups. Alternatively, because our participants considered several elements of CoC conversations rather than focusing on simply who would talk to them about costs, the reported preferences may reflect a broader perspective that was similar despite underlying differences in culture, geographic setting, and health care setting.

Despite the growing body of literature indicating patient preference for receiving CoC information and holding conversations after a cancer diagnosis, prior studies point to the infrequency and variability of cost-related discussions in clinical settings. CoC conversations occur in only 30% to 45% of encounters, and the topic is predominantly brought up by patients or their caregivers.^17,18 In studies in which physicians brought up costs, CoC conversations occurred in only a quarter of medical encounters and cost-reducing strategies were not often discussed.^19,20 On the basis of these studies, it seems that patients with cancer and their caregivers may have to advocate on their own behalf for cost information, and that CoC discussions, when they occur, are variable in terms of content. However, implementing strategies and workflows to routinely engage in CoC conversations within health care settings will help not only address cost needs and medically related financial hardship, but also improve patient satisfaction and, ultimately, improve health outcomes.^21,22

Although limited, existing research outlines different staffing strategies, clinical workflows, and intervention targets that may be incorporated within health system interventions to address CoC concerns.^21-25 Adding to this literature and to what we reported previously,⁸ our findings suggest several elements to consider when implementing CoC conversations in oncology settings. It is important, for example, to consider the need to hold conversations that respect patient privacy. Moreover, evaluating how cost information is delivered is imperative: patients do not want complex explanations, but straightforward presentations that meet patients’ information needs in plain language. Furthermore, cancer centers must consider the best way to approach newly diagnosed patients, as well as timing of this approach as it relates to the vulnerable time of diagnosis and to the impact of chemotherapy on the patients’ cognitive abilities. Thus, clinics should allow patients the opportunity to choose when to review CoC information, while making it explicit that the information, as well as the opportunity to discuss it with knowledgeable staff, is available. Although large cancer centers may be able to add staff such as financial counselors or navigators, smaller centers may not and would need to evaluate carefully whether patients are willing to have CoC conversations with their physicians or other team members. Last, as reported previously,^8,26 empathy and the willingness to support patients with this added challenge to a serious diagnosis are key to providing the best care to patients with cancer.

This study has limitations. First, the interviews were not designed specifically for investigating preferences about CoC conversations, nor were they identical. For the KPWA population, patients were asked to comment on examples of patient experiences with CoC and interactions with health care providers. For the UABCCC population, patients commented on a CoC flyer communicating estimated costs. These formats could have influenced participants’ responses to questions related to CoC conversations. Second, although the sample sizes were small, they are appropriate for this qualitative analysis, and the results are in line with results for larger groups of survivors.⁸ Third, participants included few males: as mentioned earlier in the text, preferences may differ by sex and may not have been detectable here. Fourth, the sample of participants may not represent cancer survivors in the United States. Therefore, future studies should confirm our findings in larger groups with different ages and sexes, cancer types and treatments, health care, and geographic contexts.

Our study supports a previously developed framework and logistics for incorporating CoC conversations within existing clinical workflows of oncology practices. CoC conversations are not only an accepted, but a desired, routine component of cancer care from the patient perspective. Practical takeaways from our study include a commitment from oncology practices to (1) designate a care team member who has time, compassion, and expertise to address patients’ financial needs and (2) provide reference materials that include CoC and relevant financial resources and a point of contact. Existing resources, such as the Association of Community Cancer Centers Financial Advocacy Boot Camp, can help practices develop these services. These actions can optimize the potential of CoC conversations to help patients with their financial needs while respecting their readiness to discuss CoC. Our study demonstrates that these preferences are shared by patients with different backgrounds and care experiences and thus, are applicable across different populations to improve the overall quality of cancer care.

AUTHOR CONTRIBUTIONS

Conception and design: Maria Pisu, Matthew P. Banegas, Nora B. Henrikson

Provision of study material or patients: Maria Pisu, Matthew P. Banegas, Nora B. Henrikson

Collection and assembly of data: All authors

Data analysis and interpretation: All authors

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

How, When, and With Whom Should Cost of Care Conversations Occur? Preferences of Two Distinct Cancer Survivor Groups

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/op/authors/author-center.

Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).

Matthew P. Banegas

Employment: VIR Biotechnology (I)

Research Funding: AstraZeneca (Inst)

No other potential conflicts of interest were reported.