How, When, and With Whom Should Cost of Care Conversations Occur?

Preferences of Two Distinct Cancer Survivor Groups

Maria Pisu, PhD; Matthew P. Banegas, PhD, MPH; Margaret I. Liang, MD, MSHS; Leah Tuzzio, MPH; Nora B. Henrikson, PhD, MPH

Disclosures

J Oncol Pract. 2020;16(9):e912-e921.

Abstract and Introduction

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).

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Next Section

Abstract and Introduction
Methods
Results
Discussion
References

Table 1. Characteristics of Study Settings and Procedures
Characteristic	KPWA (Henrikson⁹)	UABCCC (Pisu⁸)
Geographic region	Pacific Northwest	Southeast
Health care setting	Health maintenance organization	NCI-designated comprehensive cancer center/academic
Patient population	Survivors receiving chemotherapy in previous 12 months	Survivors with breast cancer diagnosis within past 5 years who received chemotherapy at time of treatment
Patient recruitment	From electronic health record	From hospital registry
Type of interview	In-person semistructured interview	In-person semistructured interview
Length of interview	90 minutes	60 minutes
Interview format	1. Participants asked about their prior experiences managing CoC	1. Participants reviewed and commented on CoC information flyers communicating out-of-pocket cost information
	2. Participants listened to story boards describing three fictitious patient experiences related to CoC	2. Participants responded to questions about their preferences for CoC conversations (eg, content and timing, who should have CoC conversations with patients)
	3. Participants responded to questions about their preferences for CoC conversations (eg, role of physicians, privacy concerns)

Abbreviations: CoC, cost of care; KPWA, Kaiser Permanente Washington in Seattle; NCI, National Cancer Institute; UABCCC, O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham.

Table 2. Sample Characteristics
Characteristic	KPWA (n = 10)	UABCCC (n = 18)
Age, years, mean (SD)	72 (8.0)	62.5 (3.5)
< 60	10	—
60–64	10	83
65–69	30	6
≥ 70	50	11
Male	20	0
Ethnicity
African American	10	44
White	90	56
Married or living as married	60
Education
Grade 12 or GED (high school graduate)	20	17
1–3 years of college (some college or technical school)	40	39
≥ 4 years of college (college graduate)	40	44
Household income, $
< 25,000		39
25,000 to < 50,000		0
50,000 to < 75,000		33
≥ 75,000		17
Missing	100	11
Insurance status
Medicare		17
Commercial/private		61
Other (Medicaid and/or Veterans Affairs)		17
No insurance		6
Cancer treatment
Chemotherapy	100	100
Radiation		44
No chemotherapy or radiation		0
Hormonal treatment		22
Financial status
I find it difficult to get by financially	0
I am just getting by financially	40
I am doing ok financially	30
I am living comfortably	30
Financial hardship
Current income not enough to meet basic needs		28
I am satisfied with my current financial situation
Not at all		39
A little bit/somewhat		33
Quite a bit/very much		28
I feel financially stressed
Not at all		22
A little bit/somewhat		44
Quite a bit/very much		33
I feel in control of my financial situation
Not at all		17
A little bit/somewhat		33
Quite a bit/very much		50

NOTE. Data are presented as % unless indicated otherwise.
Abbreviations: GED, General Education Development; KPWA, Kaiser Permanente Washington in Seattle; SD, standard deviation; UABCCC, O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham.

Table 3. Illustrative Quotes for Three Constructs of Interest: Who Should Conduct CoC Conversations and When and How Should They Occur?
Participants From KPWA (Henrikson⁹)	Participants From UABCCC (Pisu⁸)
Construct 1: Who should have CoC conversations with patients with cancer?
Theme 1: Participants felt that the provider's main role was medical care, not also addressing CoC concerns
I hate it that doctors have to spend any part of their brains thinking about the money. [203]	Because I want them to focus on treating the cancer patients and curing them. I think it should be somebody else's role, so that their time and energy is not spent on that. [212079]
I don't think my oncologist would want to talk to me about cost. She doesn't have time. She barely has time to… answer the questions I need to have answered about my condition… [But] I could have received that from the doctor in a general kind of way, that there are two options…they both work…without the [cost] numbers. Just one's more expensive than the other. [207]	Yeah, [the physician] can introduce but she doesn't necessarily have to discuss—because I'm sure she doesn't know the financial implications. [212073]
I would like the doctor to… suggest the treatment that they prefer is most effective. And then tell me what the cost would be and then see if there's any way to reduce those costs if I say that's an awful lot of money. [209]
They should ask because a lot of people wouldn't say anything and wouldn't think about it. [206]
Theme 2: Participants felt that a care team member or other staff member whose main role was addressing cost-related needs was most appropriate
What would be really ideal would be, especially for cancer treatment, is that you have a care team, and there's a person on that care team that is working with you about navigating benefits, coverage, financial planning. And that's your person. [201]	I would think the lady in the education department who talked about how my treatments were going to be and how you felt during your treatments and all that. [212135]
The way that visits are set up in general, I always feel that you get more time and can be a little more human, casual, you know, get the whole picture of, you know, your situation with the MA [medical assistant] rather than the doctor. [203]	Someone from my doctor's office like maybe a nurse. Not necessarily the nurse, but someone that looked like they had—not the receptionist, but someone that looked like they had knowledge of what is going on in the office. Not the clerk that answers the phone, because she is just making appointments, but a person behind her. It does not necessarily have to be the nurse. It could be the bookkeeper, or whatever. Somebody that looks like they have got a little sense and can tell you what it is going to cost you. [212090]
Yeah, well, you can't always get the same person. Believe me if you could, I would…I'd just as soon talk to the same person as long as that person knows what they're doing. [210]	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. [513048]
Construct 2: When should CoC conversations occur?
Theme 3: Participants had strong convictions on when and if they want to hear or discuss CoC
Payment plan, you know, is very important. Because not everyone can just pull out money and pay it. They need a plan…Because, you know, it's not cheap at all. Okay. If this plan doesn't work, can we look at another plan…[204]	Once the initial diagnosis has been done and a treatment plan has been established as to what you're going to do, then the cost of the treatment plan needs to be addressed too at that time…In the beginning when they talked to me about what treatments. [212085]
When I received my [cancer] diagnosis, I would not have been emotionally capable of dealing with the cost at that appointment….once I actually found out the diagnosis, I was so emotionally overwrought that I would not have been able to deal with it. [207]	And then maybe I could've budgeted my money better if I had known what the cost is going to be before all this. [412017]
There was a good six weeks in there [between diagnosis and surgery] when I had lots of time to do things and think ahead and had a pretty clear brain to do it, so I would rather have had that conversation in there. [203]	Well, I really did not like all the hoopla when I first was diagnosed. Because you're so overcome with all the information you're processing, I just didn't want to hear all of that. [513048]
Theme 4: Participants felt that information and resources should be available when they are ready to address costs
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. [201]	I think it would be helpful too if there was somebody on the team, the oncology team, that could actually talk about the costs and what to expect and what people could actually do with regard to maybe various resources that may be available for it. [513049]
Whether it would be helpful to get the information at the time of the diagnosis. I probably wouldn't be emotionally in a place where I could, you know, relate to it. But if I could have it in my hand to take home and think over, that would be okay and certainly better than having to go back and get it, you know, another time. Having to make a second trip to get the cost information would be an inconvenience. [207]	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 and what wouldn't be covered because if you knew it all at one time you're not going to pay attention to it. So, if you could have that team to come in a little bit later to explain it. [513049]
I suppose early is good because you know there's somebody you can contact, somebody you can go to when you have questions. [208]
Construct 3: How should CoC conversations happen?
Theme 5: Clear estimates of anticipated out-of-pocket costs and insurance coverage should be provided
Here's your plan. Here's what you paid today. Here's what you still need to pay. It's just very–it's very simply laid out and clear. It's not a bunch of words and numbers you have to figure out…just give me the bottom line…The details I don't need to know. What am I going to be paying. How can you help me. Is there a copay. [204]	So they'll break it down to you like you first go through to chemo, this is how much your chemo is going to cost, this is how much the insurance is going to pay, and this is how much your copay is going to be. So, the financial person that knows the ins and outs or the cost of cancer treatment and know your bloodwork, your radiation, your chemo, your doctor's appointment, how much the doctor is going to cost, how much your meds are going to cost, give it to you and break it down so you will know… you're going to be out of work for a while and your insurance is not going to pay for this, so you need to get this for this and this for that and that for that, so you have a better understanding of what you need and, what you need and how you're going to get the money to do what you need to do. [412017]
It would be nice if at the front end of treatment you had a billing specialist that really sat down with somebody and said this is your treatment plan. This is what we anticipate costs will be for various parts of this plan. It may change because treatment might change. And this is what your insurance covers. This is what you can expect to pay. [201]
Theme 6: The care team should provide reassurance and sympathy and offer concrete solutions
[Doctor or medical assistant would acknowledge financial hardship] in a sympathetic and understanding tone, because I'm sure the patient is embarrassed. [209]	Well, first of all, do you want to talk to someone about it? Some people might not want to discuss their financial responsibilities. They may either feel like it's none of your business or they may feel like…they may be embarrassed to talk about it. If they really can't afford the treatment? Is there help available for them? I feel like it should be in the beginning though and maybe a little bit more explanation about when with the treatment start. [513048]
…if you're in the category where you need help, I think it should be a special person to help you. I really do…Because they know how to talk to you and not make you feel bad… Because if you can't afford to pay, you're not going to feel very good about it. Right? [210]	It would be most helpful, I think, if they're aware of what your insurance covers, aware of what Medicare will or won't cover, and someone who is not just going to lay out the costs and say this is what you've got to come up with… But also, knowledge about community resources that are available to you, whether it's Medicare, Medicaid, or something through the cancer foundation. [613010]
Theme 7: Discussions should be conducted in a comfortable, private, convenient space
I would probably be more comfortable discussing it at the doctor point instead of maybe necessarily out in front of everybody in the check-in… I suppose I might be a little taken aback if somebody at the front desk had said, hey, are you worried about what the cost estimate is. Do you want to discuss that or something like that… not as confidential. [208]	But I think the patient needs to be dressed, and feel comfortable in an office setting…Or it can be in the clinic, but not an exam room…But have it nearby. No. It's not three stories down and around the corner. You have it centrally located. [412050]
It depends on a number of factors…how much time I had that day. If I was planning to be there for an hour and I ended up spending three years, you know, that could be a problem. [207]

NOTE. Numbers in brackets are participants' research IDs.
Abbreviations: CoC, cost of care; KPWA, Kaiser Permanente Washington in Seattle; UABCCC, O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham.

Authors and Disclosures

Maria Pisu, PhD^1,2, Matthew P. Banegas, PhD, MPH³, Margaret I. Liang, MD, MSHS^2,4, Leah Tuzzio, MPH⁵ and Nora B. Henrikson, PhD, MPH⁵

¹Division of Preventive Medicine, Department of Medicine, University of Alabama at Birmingham, Birmingham, AL
²O'Neal Comprehensive Cancer Center at University of Alabama at Birmingham, Birmingham, AL
³Kaiser Permanente, Center for Health Research, Portland, OR
⁴Division of Gynecologic Oncology, Department of Obstetrics and Gynecology, University of Alabama at Birmingham, Birmingham, AL
⁵Kaiser Permanente Washington Health Research Institute, Seattle, WA

Corresponding Author
Maria Pisu, PhD, MT 636, 1720 2nd Ave South, Birmingham, AL 35294–4410; Twitter: @ONealCancerUAB, @UABSOM, @UABNews, @KPWaResearch, @KPCHR; e-mail: mpisu@uab.edu.

Authors' Disclosures of Potential Conflicts of Interest and Data Availability Statement
Disclosures provided by the authors and data availability statement (if applicable) are available with this article at DOI https://doi.org/10.1200/JOP.19.00726.

How, When, and With Whom Should Cost of Care Conversations Occur? Preferences of Two Distinct Cancer Survivor Groups
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Matthew P. Banegas
Employment: VIR Biotechnology (I)
Research Funding: AstraZeneca (Inst)

No other potential conflicts of interest were reported

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