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Oncologists’ Views on Using Value to Guide Cancer Treatment Decisions

Open ArchivePublished:March 24, 2018DOI:https://doi.org/10.1016/j.jval.2018.01.005

      Abstract

      Objectives

      Cancer costs have increased substantially in the past decades, prompting specialty societies to urge oncologists to consider value in clinical decision making. Despite oncologists’ crucial role in guiding cancer care, current literature is sparse with respect to the oncologists' views on value. Here, we evaluated oncologists perceptions of the use and measurement of value in cancer care.

      Methods

      We conducted in-depth, open-ended interviews with 31 US oncologists practicing nationwide in various environments. Oncologists discussed the definition, measurement, and implementation of value. Transcripts were analyzed using matrix and thematic analysis.

      Results

      Oncologists’ definitions of value varied greatly. Some described versions of the standard health economic definition of value, that is, cost relative to health outcomes. Many others did not include cost in their definition of value. Oncologists considered patient goals and quality of life as important components of value that they perceived were missing from current value measurement. Oncologists prioritized a patient-centric view of value over societal or other perspectives. Oncologists were inclined to consider the value of a treatment only if they perceived treatment would pose a financial burden to patients. Oncologists had differing opinions regarding who should be responsible for determining whether care is low value but generally felt this should remain within the purview of the oncology community.

      Conclusions

      Oncologists agreed that cost was an important issue, but disagreed about whether cost was involved in value as well as the role of value in guiding treatment. Better clarity and alignment on the definition of and appropriate way to measure value is critical to the success of efforts to improve value in cancer care.

      Keywords

      Background

      The increasing costs of cancer care in the United States have been the source of recent concern from diverse parties, ranging from members of Congress to patients facing difficult cancer treatment decisions. Growth in cancer costs has outpaced growth in general medical costs [
      • Mariotto A.B.
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      Projections of the cost of cancer care in the United States: 2010-2020.
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      Outpatient cancer drug costs: changes, drivers, and the future.
      ,
      • Heffler S.
      • Levit K.
      • Smith S.
      • et al.
      Health spending growth up in 1999; faster growth expected in the future.
      ,
      • Bach P.B.
      Limits on Medicare's ability to control rising spending on cancer drugs.
      ], with global spending on oncology drugs increasing by 11.5% in 2015 alone [
      IMS Institute for Healthcare Informatics
      ]. Costs of cancer drugs to treat the same indication can vary substantially, even among regimens with similar efficacy [
      • Giordano S.H.
      • Niu J.
      • Chavez-MacGregor M.
      • et al.
      Estimating regimen-specific costs of chemotherapy for breast cancer: observational cohort study.
      ]. The cost of a new cancer medication is well in excess of $100,000 annually, with the price of a cancer drug independent of its novelty [
      • Mailankody S.
      Five Years of Cancer Drug Approvals: Innovation, Efficacy, and Costs.
      ]. The increasing need to balance a treatment’s effectiveness against its cost has prompted the American Society of Clinical Oncology (ASCO) and National Comprehensive Cancer Network (NCCN) to recommend that oncologists consider value in treatment recommendations [
      • Schnipper L.E.
      • Davidson N.E.
      • Wollins D.S.
      • et al.
      American Society of Clinical Oncology Statement: a conceptual framework to assess the value of cancer treatment options.
      ,
      National Comprehensive Cancer Network
      ] and the National Academy of Medicine (NAM) to recommend that oncologists discuss the value of treatment with their patients [
      Institute of Medicine
      Delivering Affordable Cancer Care in the 21st Century: Workshop Summary.
      ]. Measurements of value differ substantially between these societies and differ from the traditional measurement of value from the field of health economics, which defines value as societal costs relative to health outcomes, the latter of which include patient preferences for health-related quality of life [
      • Porter M.E.
      What is value in health care?.
      ]. For example, the ASCO framework couches value in terms of health care costs relative to treatment effect, treatment-free interval and (clinical-trial assessed) patient quality of life, but does not include patient preferences or quality-of-life information from a community sample. Nonetheless, among these societies, there is high consensus that the costs of cancer treatments need to be weighed against the benefits.
      There are many ways to consider costs relative to health benefits, and there are many agents who can do so, including oncologists. Oncologists have a large role in guiding cancer treatment and determining the value of cancer treatment choices; however, their perspectives toward value are not well understood. The existing literature has studied oncologists’ perceptions of chemotherapy, utilizing surveys with predetermined answer choices regarding what constitutes high- versus low-value care [
      • Berry S.R.
      • Bell C.M.
      • Ubel P.A.
      • et al.
      Continental divide? The attitudes of US and Canadian oncologists on the costs, cost-effectiveness, and health policies associated with new cancer drugs.
      ,
      • Khan S.
      • Sylvester R.
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      • Pitts B.
      Physicians' opinions about responsibility for patient out-of-pocket costs and formulary prescribing in two Midwestern states.
      ,
      • Kozminski M.A.
      • Neumann P.J.
      • Nadler E.S.
      • et al.
      How long and how well: oncologists' attitudes toward the relative value of life-prolonging v. quality of life-enhancing treatments.
      ,
      • Nadler E.
      • Eckert B.
      • Neumann P.J.
      Do oncologists believe new cancer drugs offer good value?.
      ,
      • Neumann P.J.
      • Palmer J.A.
      • Nadler E.
      • et al.
      Cancer therapy costs influence treatment: a national survey of oncologists.
      ,
      • Schrag D.
      • Hanger M.
      Medical oncologists' views on communicating with patients about chemotherapy costs: a pilot survey.
      ], rather than larger questions of how or whether to incorporate value into decision making. It is thus unclear how oncologists view this call toward using value to inform the overall treatment of cancer patients or their level of comfort in discussing value with their patients. This dearth of evidence prompted us to conduct a qualitative study to understand aspects of value that are relevant, advantageous, and/or problematic from the oncologists’ perspective. Our study focuses on provider perspectives, as evidence indicates that buy-in from providers is crucial in effecting successful change in health care practices [
      • Eisenberg J.M.
      Physician utilization.
      ,
      • Ducharme J.
      • Buckley J.
      • Alder R.
      • Pelletier C.
      The application of change management principles to facilitate the introduction of nurse practitioners and physician assistants into six Ontario emergency departments.
      ,
      • Skillman M.
      • Cross-Barnet C.
      • Singer R.F.
      • et al.
      Physician engagement strategies in care coordination: findings from the Centers for Medicare & Medicaid Services' Health Care Innovation Awards Program.
      ,
      • Caverzagie K.J.
      • Bernabeo E.C.
      • Reddy S.G.
      • Holmboe E.S.
      The role of physician engagement on the impact of the hospital-based practice improvement module (PIM).
      ] Our work presents oncologists’ perceptions of value, including the merit of value in cancer care, the best way to measure value, and whether/how value should be used to guide treatment decisions. Insights gleaned from this work can inform future efforts to use value to improve cancer treatment decision making in the United States, especially in light of the various measurement recommendations posed by the ASCO and the NCCN, and may potentially increase the success of such efforts.

      Methods

      We conducted semi-structured telephone interviews to evaluate oncologists’ perspectives on value. Following guidelines for sample selection and methods in qualitative research, recruitment was conducted on a rolling basis from July 2015 to January 2016 until theme exhaustion was reached [
      • Namey E.
      • Guest G.
      • McKenna K.
      • Chen M.
      Evaluating bang for the buck: a cost-effectiveness comparison between individual interviews and focus groups based on thematic saturation levels.
      ,
      • Guest G.
      • Bunce A.
      • Johnson L.
      How many interviews are enough? an experiment with data saturation and variability.
      ]. Criterion sampling using oncology professional email lists and snowball sampling using investigators’ professional networks were used to recruit oncologists [
      • Palinkas L.A.
      • Horwitz S.M.
      • Green C.A.
      • et al.
      Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.
      ]. Oncologists were eligible to participate if greater than 20% of their patient panel had metastatic solid tumors, if they spent at least 50% of their time in clinical practice, or if they served in a national leadership capacity. We included oncologists working in academic medical centers (AMCs), community medical centers, and the Veterans Health Administration (VA) [
      • Palinkas L.A.
      • Horwitz S.M.
      • Green C.A.
      • et al.
      Purposeful sampling for qualitative data collection and analysis in mixed method implementation research.
      ]. These diverse environments were chosen to capture a range of views. Oncologists who practice in AMCs generally specialize in treating one type of cancer; those who practice in community medical centers and the VA treat a variety of cancer types. Oncologists in AMCs and the VA are more likely to have research duties; those practicing in the community have an exclusively clinical workload. Additionally, anecdotal evidence suggests that patients seen in AMCs may have greater severity of illness compared with those seen in the community. Published literature indicates that patients seen in the VA centers have greater comorbidity burden and lower socioeconomic status compared with non-VA patients [
      • Agha Z.
      • Lofgren R.P.
      • VanRuiswyk J.V.
      • Layde P.M.
      Are patients at Veterans Affairs medical centers sicker? A comparative analysis of health status and medical resource use.
      ], which may add to the complexity of their care.
      Semi-structured interviews using open-ended questions covered the definition of value in cancer care and the use of value to inform treatment choice. We chose a qualitative approach because the topic of embedding value in clinical practice is novel, is highly nuanced, and requires an in-depth exploration that is unconstrained by investigators’ judgment regarding the most salient variables. After each interview, investigators summarized the findings by using analytic notes to assess themes and theme exhaustion. Questions pertained to the treatment of patients with late stage III or stage IV solid tumors and were vetted by a panel of oncologists (DB, MP, KR), clinicians (SA), and qualitative experts (CT, PAK) before inclusion. Interview recordings were transcribed verbatim by a professional transcription service. Participants provided oral consent and received no incentives for participation. This study was approved by the Stanford University Institutional Review Board.
      A health economist with content expertise (RG) and an anthropologist with qualitative methods expertise (AN) used a multiphase qualitative analysis process involving matrix [
      • Averill J.B.
      Matrix analysis as a complementary analytic strategy in qualitative inquiry.
      ] and thematic analyses [
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      ]. Investigators independently reviewed and summarized each transcript into a matrix, resolving discrepancies through consensus. Investigators inductively and independently identified candidate themes and collectively refined this list to develop final themes. A coding by committee approach [
      • Saldaña J.
      The Coding Manual for Qualitative Researchers.
      ] was used to assign themes to the cells in the matrix. Consistent with a thematic approach to qualitative data analysis, we do not present frequencies of responses but focus on illustrative descriptions and quotes [
      • Braun V.
      • Clarke V.
      Using thematic analysis in psychology.
      ]. Further details about the analytic approach can be found in the Appendix.

      Results

      We interviewed 31 oncologists before reaching theme exhaustion. The characteristics of these oncologists are presented in Table 1. We identified seven major themes regarding oncologists’ views toward value.
      Table 1Respondent characteristics
      N (%)
      Gender
      Female15 (48%)
      Male16 (52%)
      Age (years)
      30–394 (13%)
      40–497 (23%)
      50–594 (13%)
      60+10 (32%)
      Declined to state6 (19%)
      Race/Ethnicity
      White9 (29%)
      Asian/Asian American2 (6%)
      Other1 (3%)
      Declined to state19 (61%)
      Geographic Region
      West17 (55%)
      Northeast3 (10%)
      South11 (35%)
      Year Completed Residency/Fellowship
      2000–present6 (19%)
      2000–20099 (29%)
      1990–19995 (16%)
      1980–19896 (19%)
      1970–19795 (16%)
      Foreign Medical School Graduate
      Yes8 (26%)
      No22 (71%)
      Declined to state1 (3%)
      Academic Affiliation
      Yes20 (65%)
      No11 (35%)
      % Time Clinical
      0–19%2 (6%)
      20–39%3 (10%)
      40–59%2 (6%)
      60–79%4 (13%)
      80–100%10 (32%)
      Declined to state10 (32%)
      % of Patients Estimated to Have Metastatic Cancer
      0–19%5 (16%)
      20–39%7 (23%)
      40–59%10 (32%)
      60–79%2 (6%)
      80–100%4 (13%)
      Declined to state3 (10%)

      Theme 1: Practicing Oncologists Do Not Share a Common Definition of Value

      Oncologists’ definitions of value in cancer care fell into eight categories: (1) cost versus benefit; (2) cost versus survival; (3) cost versus quality-adjusted life-years; (4) holistic care; (5) quality of life; (6) gold-standard care processes; (7) cost versus gold-standard care processes; and (8) meeting patient and family goals (see Table 2 for definitions and examples of each). Oncologists were divided on whether cost had any role to play in value. Some respondents indicated costs did have a role to play in value.“Costs matter—dollar costs matter in terms of relative value, number one. So if you can give something with the same outcome that's less expensive, then that should be preferred.”
      Table 2Exemplary quotes regarding the 8 types of value definitions (Theme 1)
      Value definition categoryExample quote
      Cost versus benefit“It’s giving the most benefit to the patient for the cost of care. Benefit [has] a broad definition, whether it be through cancer outcomes, pain control, or symptomatic relief for the cost and time and resources. I consider the cost of time and effort for the patient, potential side effects, and sometimes financial costs.”
      Oncologist defines value in terms of the cost of treatment relative to a wide range of patient outcomes
      Cost versus survival“Well, cost benefit… sometimes [a course of drug] might cost well over a hundred thousand dollars and there’s a two week or a two month survival benefit. To some patients, living a couple extra months is extremely important and to some they say, “well, I don't really want to do anything if it’s not curable”. So value is kind of based on the individual.”
      Oncologist defines value in terms of the cost of treatment relative to only survival outcomes
      Costs versus quality-adjusted life-years“Broadly speaking, that you get the best possible outcome with the least possible cost and harm. That’s really a broad statement, but an example would be treating someone with very toxic therapy for what I think of as a short life expectancy gain, where maybe the tradeoff is that you spend four months getting treatment that makes you feel horrible, so that you can live two months longer. That doesn’t always seem to be a value, even though that two months is maybe a statistically significant different in outcome. So the value has to be there, not only quantity but quality of life for people.”
      Oncologist defines value in terms of the cost of treatment relative to both survival and quality of life
      Holistic care“Patients get total care for everything related to their cancer diagnosis with one payment. What I mean by that is they would pay an institution for their traditional chemotherapy care. On top of that, they also get access to dieticians, nutritionists, rehab consultation or physical therapy consultation. They get palliative medicine, evaluation, social work, and it’s all part of a package deal—it’s not like they have to pay extra for it.”
      Oncologist defines value in terms of a multidisciplinary and holistic approach to cancer care
      Quality of life“I think [value] shouldn’t just be measured by overall survival, but quality of life has to really be integrated into that. I’m extending the patient’s life by two months, if they’re filled with chemotherapy side effects and toxicity, have we increased the value? Some would say yes, because we’ve extended their life by two months. But in my opinion, if there’s high toxicity that decrease their quality of life, then I would say I don’t know whether we have added any value to the cancer care.
      Oncologist defines value in terms of patient quality of life
      Gold-standard processes of care“Value is encompassed by best practices and delivering gold-standard care to every patient in a strategic fashion so that these best practices are uniform and consistent and reproducible. So that it doesn’t depend on which oncologist you happen to be assigned to, because we all see a certain package as being valuable for treatment, and this is the package that every patient should be offered, with variation for personal goals or attributes.”
      Oncologist defines value in terms of providing high-quality processes of care
      Gold-standard care versus costs“It has to do with the best possible outcome at a fair price. I have two very pragmatic ways I interpret that. I want to make sure that the right patient gets the right treatment at the right time. And the second thing is making sure the patient has the best possible outcome and the best possible experience.
      Oncologist defines value in terms of providing high-quality processes of care at an acceptable cost
      Meeting the goals of patient/family“[You’re] using all the new drugs but they’re so expensive and your benefit is maybe not great. You will not get value for the money you’re spending on the patient, especially stage 4 patients. We may be improving their lifespan by maybe three months, four months, six months at the most. But if you’re spending thousands of dollars, is it worth the spending [to get] another couple of months of life? Probably not. But then who [should] judge [that]? The patient. If it's the patient who wants to try it and thinks it’s going to help him, we cannot deny that option because of the dollar issues.
      Oncologist defines value in terms of treatment meeting patient/family goals
      Conversely, others and the others denoted cost had no role to play in value.“[Value is when the] benefits outweigh the risks or alternatives; I think that’s probably the best way of summarizing it. So it’s going to be subjective, [because] how do you define benefit? Is it that I’m going to get you an extra two months [of life] or I’m going to make your pain better or I’m just going to relieve suffering? Am I truly going to make you live longer?…I don’t look at the costs because I think if you do it muddles your thinking.”
      Some oncologists expressed concern that focusing on value in cancer care could produce problems such as creating inequalities among patients of different sociodemographic status (e.g., old versus young, working versus nonworking), reducing oncologist autonomy in decision making or being used primarily as a tool for reducing costs.

      Theme 2: Oncologists Prioritize Patients’ and Caregivers’ Quality of Life When Assessing the Value of a Treatment

      Oncologists’ responses definitions of value often encompassed patient and family quality of life and goals of care and were not focused on simply tumor control. Oncologists denoted the following variables as important when evaluating the value of a treatment modality for patients with advanced cancer: quality of life; pain control; reduction in patients’ ability to engage in other activities; burden on family; mental health issues; loss of work productivity; and the opportunity costs to patients and family members of the time spent receiving medical care, including hospitalization.“[Value in cancer care is] the patient’s quantity of life, it significantly prolongs life without a meaningful detriment in their quality. Preferably with quality that means something to them, [that] enables them to live their life in a way that they are satisfied with their quality of life.”
      Oncologists evaluated the contribution of these variables to a treatment's value differently based on the patient's age or family responsibilities. For example, one oncologist noted that he was more willing to treat a working-age patient with small children with an expensive oral chemotherapy compared with treating a retired patient, given the opportunity costs of the former’s time in coming to the infusion clinic. Another oncologist noted a potential survival cost to chemotherapy for patients with metastatic disease, suggesting that it may be both harming patient quality of life and potentially shortening the life of the patient.

      Theme 3: Oncologists Prioritize a Patient-Centric View of Value Over a Societal or Other Larger Perspective Toward Value

      Oncologists focused on how costs and health benefits impacted patients directly; financial consequences to the society or other patients were rarely discussed. Similarly, spillover effects of health benefits or adverse events to others beyond the patient were also infrequently mentioned.“We’ve tended to define value in rather in a perverted way. We’ve looked at it from a societal standpoint, we’ve looked at it from a cost standpoint, we have looked at it from a clinician standpoint. But there has really not been much of a discussion about what is valuable to a patient. And that’s why I think that the whole argument about what is value is so arbitrary and esoteric that it frankly doesn’t make sense to anybody.”

      Theme 4: Oncologists Have Diverse Perspectives About Why Cancer Costs Are High

      Although all oncologists reported that the current costs of cancer care were high, many viewed these high costs as an acceptable use of health care resources, given the seriousness of the illness and the benefits yielded from treatment.“Yes, it's expensive, but people are going to die without it and how much will people spend for their life?…We spend a lot of money on a lot of things that have very little value. At least in cancer the seriousness of the illness is substantial.”
      Oncologists brought up high costs in other areas of medicine as a way to justify the high costs of cancer care, noting substantial costs for hepatitis C treatment and for dialysis. A few oncologists noted that the cost of cancer care was high because it was “what society would bear.” Some viewed Medicare policies as driving up costs of care because of lack of preauthorization for treatments and Medicare’s prohibition of concurrent cancer care and hospice care. Last, one oncologist noted that although the cost of cancer care was high, she perceived that patients in the United States were insulated from these costs in a way patients in less developed countries were not.
      Although some oncologists provided rationales for the high cost of cancer care, the majority of oncologists stated that the cost of cancer care was troubling, for two main reasons: (1) its low value at the individual-patient level and (2) how it can bankrupt patients and families. A concern of oncologists was that high-cost cancer care was often misaligned with patient preferences.“I think the problem comes when costs are what I would consider to be unnecessarily inflated by not focusing on goals of care conversations, patients dying in intensive care units where that wouldn’t have been part of their plan and expectations, yet that’s happening anyway. So I think there are a number of things where we’re spending money where we don’t have to and are focusing on costs in the wrong places.”

      Theme 5: Oncologists Largely Begin to Consider the Value of a Treatment When They Perceive Cancer Treatment Is Posing a Financial Burden to Patients

      The majority of oncologists did not report treatment costs influencing their practice style. However, if they perceived the treatment they were prescribing imposed a financial burden on their patients, oncologists reported they would then order a lower-cost medication that was as effective as a higher-cost medication. A minority of oncologists noted that high cost was only problematic when patients had to pay out of pocket for treatments. In fact, one oncologist noted that if a third party would pay for the chemotherapy, he advised his patients to try the drug because it would not impact their finances. If the patient had to pay out of pocket, he encouraged the patient to forgo that treatment.“If I see a patient who has to pay from his pocket, maybe I tell them to forgo the treatment because they can't afford it and it basically bankrupts them. And if it's paid by [a] third party, then they'll try it. Let try it because it's not going to hurt me and my family financially.”
      Only two of the 31 oncologists we interviewed informed us that they were not aware of the costs of cancer care.

      Theme 6: Oncologists Have a Wide Range of Views on the Merit of Discussing Cancer Care Value with Patients

      Although oncologists reported discussing treatment efficacy/effectiveness with patients, they differed in their opinions about if, how, and by whom the costs of treatment should be discussed with patients. Some oncologists noted that it was important that patients always be aware of costs and outcomes of care when making treatment decisions, although some noted that this was important only when there was no evidence for the effectiveness of a high-cost drug.“I think that this whole movement about value, no one is talking about the patient part of the equation. It’s not exclusively about the drug companies rolling their prices. It’s not exclusively about the physicians not making it clear to patients about the anticipated benefits versus costs. It’s about patients’ expectation that healthcare is free, that they should have whatever they want. We actually [have to] start putting those numbers in front of the patient. And it’s a sad thing to do when people are sick and dying.”
      However, even when oncologists felt value should be discussed with patients, they did not necessarily feel that the oncologist should be responsible for discussing the cost portion of value.“I do think we are, in many cases, spending way too much money on these treatments that may not be offering much in terms of long-term benefit. But I don't feel that we as oncologists are in a position to tell patients that they should not do something just because it’s expensive. I think there needs to be some work at sort of a grassroots level to try to figure out ways to lower costs of some of these things.”
      One oncologist noted there was danger in not discussing costs—that is, in the absence of discussing less expensive alternatives, a patient may see the expensive drug as his or her only hope and thus not communicate any financial concerns.“When we make the recommendation about a drug, there probably should be a component of financial counseling by maybe the people who have to put it through the [insurance] authorization process so that everybody’s aware of what the out-of-pocket costs would be. But if nobody’s asking these questions [about out-of-pocket costs], then the patient’s going to think that this [treatment] is my only hope and is not going to complain about paying X number of dollars out of pocket.”
      Some oncologists believed conversations with patients should focus on utilization rather than costs and noted that those conversations would, in turn, save money and encourage higher-value care. For example, they felt that eliciting patients’ preferences regarding where they prefer to die and having goals of care conversations would circumvent the use of expensive intensive services at the end of life.“The costs that are incurred near the end of life are costs that are not aligned with patient preferences, since I’ve yet to meet a patient that would prefer to die in the hospital if they had a choice. A lot of these costs are side effects of conversations that are not occurring, like preferences for where people want to die, true information about the potential efficacy of a drug and [communicating] that information into a way that patients can understand. If you had to pay $100,000 for something that had a 10 percent chance of working, that on average let you live three weeks longer, there are going to be a minority of patients who want to incur that; it means a long term legacy that may be financial or otherwise that may affect their family.”
      Other oncologists noted that having conversations about the true effectiveness of drugs would reduce patients' desires to engage in treatment and would thus save money and improve value without having to discuss cost. Conversely, other oncologists stated that it was unethical to consider costs of care and that treatment should be driven only by evidence regarding treatment efficacy and guidelines.

      Theme 7: Oncologists Who Think Value Should Be Discussed Disagree About Who Should Have This Conversation With the Patient

      Oncologists’ views about their own roles in cancer care value fell into three categories: (1) high autonomy/high responsibility; (2) high autonomy/low responsibility; and (3) low autonomy/low responsibility. The high-autonomy/high-responsibility group felt that oncologists should maintain the ability to prescribe any treatment and that it was the role of the oncologist to initiate cost and outcome (value) discussions with patients. The high-autonomy/low-responsibility group felt that oncologists should have the ability to prescribe any treatment. They also felt that value should be considered but preferred to have the value conversation initiated by another party (e.g., financial counselor, social worker). The low-autonomy/low-responsibility group did not want to be part of value discussions and felt the better course of action was to have a limited number of available treatment options that had already been vetted by another entity as being of high value. Members of this group did not want to be involved in value considerations because they did not see this as part of their role or were worried that their involvement may be perceived poorly. Specifically, oncologists noted that if they discussed costs in addition to health benefits, it may result in the patient/family believing that the oncologist was prioritizing cost considerations over the patient’s best interests.“Most of the time we don't [discuss the cost of care] because then the patients and families think hey, these guys are looking at the dollars and not providing the care, and maybe [this treatment] may benefit me. So, that's kind of really controversial. Plus it's very uncomfortable even to talk about the money and the care we provide to them. That's a huge problem that we do see here. And patients will get mad because they think that you're not providing care because it's costing too much to the system.”
      In contrast, other oncologists noted the need to have a cost conversation when they discussed treatment outcomes with patients to support informed shared decision making.“I tend to explain to them what the cost is and what the benefit is. And some patients actually say, ‘I don't think it's worth it.’ So, I will give them [information about the] cost and the side effects and the benefit and we'll make the decision together.”“I think we have to make patients aware of the cost of what we're giving them and make them decide, do you want to use brand-name Zofran which is $40 a pill or are you okay using [generic] ondansetron and that will give you more money to buy something else?”
      One oncologist reported that he had more concerns about value than his patients did, noting that it was difficult to get patients to consider the cost of a treatment in conjunction with its health benefit unless the treatment cost meaningfully affected them through cost sharing.

      Discussion

      This first-of-its kind exploratory analysis of US oncologists’ perceptions of the role of value in informing treatment decisions for patients with advanced cancer revealed a wide range of viewpoints that can inform future work to improve the value of cancer care. First and foremost, although most oncologists agreed that high costs of cancer treatment were an important issue, they did not share a common definition of value or cost, nor did they agree on the merit of using value to inform treatment decisions or discussions. Use of a common definition of value and developing a shared belief in the importance of value considerations will be crucial first steps to accomplish for any stakeholder aiming to improve the value of cancer care.
      There was a wide range in the oncologists’ current definitions of value. Many of the definitions provided by oncologists differed from definitions of value that have been proposed by oncology societies and NAM and also differed from the traditional health economics’ definition of value. Health economists define value as cost relative to health outcomes and specifically, whether the additional monies spent to achieve a health outcome are proportional to the incremental health benefit of an intervention [
      • Porter M.E.
      What is value in health care?.
      ]. NAM, ASCO and NCCN also all consider costs to be a seminal component of the value definition [
      • Schnipper L.E.
      • Davidson N.E.
      • Wollins D.S.
      • et al.
      American Society of Clinical Oncology Statement: a conceptual framework to assess the value of cancer treatment options.
      ,
      National Comprehensive Cancer Network
      ,
      Institute of Medicine
      Delivering Affordable Cancer Care in the 21st Century: Workshop Summary.
      ]. In contrast, many of the oncologists we interviewed believed that cost had no role at all to play in value considerations. Other oncologists’ definitions echoed the health economic definition of value, which include patients’ preferences or goals. Interestingly, although these oncologists were aligned with the traditional health economic approach to value, some noted that they did not agree with using “value” to make treatment decisions because it did not include patient preferences. However, this indicates lack of familiarity with the traditional definition of value (noted above), rather than a discrepant view of how to measure value. Some of this perceived (rather than actual) difference may stem from familiarity with the ASCO and other highly publicized oncology value frameworks that do not incorporate patient preferences [
      • Schnipper L.E.
      • Davidson N.E.
      • Wollins D.S.
      • et al.
      American Society of Clinical Oncology Statement: a conceptual framework to assess the value of cancer treatment options.
      ]. Conversely, health economists regularly elicit preferences with regard to health care from patients or the general community and include these in value assessments in the form of the quality-adjusted life year, or QALY. Thus, our results suggest that clearer communication about the way value is traditionally measured in the field of health economics may assuage many oncologists’ concerns about the use of value to inform treatment decisions.
      When oncologists did consider the cost side of value, their views were focused on their patient’s experience, rather than the broader societal impact of these costs. Many indicated that costs mattered only when patients incurred them through cost sharing. In fact, a substantial proportion of our respondents expressed beliefs that insurance coverage results in free or very-low-cost care for their patients, and they thus perceived these patients were insulated from cost or value concerns. However, evidence indicates patients with cancer experience significantly higher financial burden compared with patients with other chronic illnesses [
      • Bernard D.S.
      • Farr S.L.
      • Fang Z.
      National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008.
      ], and patients with insurance continue to experience cancer treatment–related financial burden [
      • Bernard D.S.
      • Farr S.L.
      • Fang Z.
      National estimates of out-of-pocket health care expenditure burdens among nonelderly adults with cancer: 2001 to 2008.
      ,
      • Zafar S.Y.
      • Peppercorn J.M.
      • Schrag D.
      • et al.
      The financial toxicity of cancer treatment: a pilot study assessing out-of-pocket expenses and the insured cancer patient's experience.
      ,
      • Shankaran V.
      • Jolly S.
      • Blough D.
      • Ramsey S.D.
      Risk factors for financial hardship in patients receiving adjuvant chemotherapy for colon cancer: a population-based exploratory analysis.
      ].
      Some oncologists mentioned they shifted to higher-value medications when they believed that treatment imposed a financial burden on patients. Using lower-value (higher-cost) medications because insurance was perceived as insulating patients from the price of drugs is an example of “ex poste moral hazard” [
      • Finkelstein A.
      • Arrow J.
      • Gruber J.
      • Newhouse J.
      • et al.
      Moral Hazard in Health Insurance.
      ] on the part of the prescriber—where the physician directs the patient to consume more health care resources simply because the price to the patient is lower than it would be were the patient responsible for its full payment. However, shifting to lower-cost, higher-value medications in the circumstances described by these oncologists may not be a sufficient approach to reduce patient “financial toxicity,” [
      • de Souza J.A.
      • Yap B.J.
      • Wroblewski K.
      • et al.
      Measuring financial toxicity as a clinically relevant patient-reported outcome: the validation of the COmprehensive Score for financial Toxicity (COST).
      ] because many oncologists may not actually be aware of their patients’ financial burdens. In addition to our results, Ubel et al. also found that specialists often mistakenly assumed that insurance coverage or pharmaceutical assistance programs insulated patients from financial costs of care [
      • Ubel P.A.
      • Zhang C.J.
      • Hesson A.
      • et al.
      Study of physician and patient communication identifies missed opportunities to help reduce patients' out-of-pocket spending.
      ]. Other studies have also found physician misperceptions of the relationship of cancer drug costs and patient financial responsibility [
      • Nadler E.
      • Eckert B.
      • Neumann P.J.
      Do oncologists believe new cancer drugs offer good value?.
      ,
      • Neumann P.J.
      • Palmer J.A.
      • Nadler E.
      • et al.
      Cancer therapy costs influence treatment: a national survey of oncologists.
      ]. This misperception is especially troubling in cancer care, given the higher cost of chemotherapy in comparison with that of other drugs and the 20% cost for infused chemotherapy that Medicare patients are responsible for paying. Even oral chemotherapies covered under Medicare Part D have high-costing sharing; for a typical duration of an oral anticancer drug, Medicare beneficiaries spend between $6500 to $12,000 out of pocket [
      • Dusetzina S.B.
      • Keating N.L.
      Mind the gap: why closing the doughnut hole is insufficient for increasing Medicare beneficiary access to oral chemotherapy.
      ], which is a substantial proportion of the $24,150 median annual household income of a Medicare beneficiary [
      • Jacobson G.
      • Swoope C.
      • Neuman T.
      • Smith K.
      ]. Having oncologists elicit information about insured patients’ financial burdens may thus be a potential strategy to support prescription of high-value treatments.
      Even when the oncologists in our study agreed that value should be discussed with patients, they were conflicted about who should conduct the conversation and how it should be conducted. These results corroborate previous work showing that 80% of oncologists agreed it is important to be explicit with patients about the financial consequences of treatment, yet less than half regularly did so [
      • Schrag D.
      • Hanger M.
      Medical oncologists' views on communicating with patients about chemotherapy costs: a pilot survey.
      ]. We also found disparate views among oncologists regarding the balance between oncologist responsibility and accountability with regard to such discussions, with respondents belonging to one of three groups. The high-autonomy/high-responsibility group wanted to maintain control over prescribing any treatment and felt they should assess value themselves at the point of care. The high-autonomy/low-responsibility group also wanted to maintain control over treatment options but preferred having other stakeholders (e.g. oncology specialty societies) focus on assessing treatment value. The low-autonomy/low-responsibility group was content to have a limited number of available treatment options that had already been vetted upstream regarding value.
      Our qualitative study has strengths and limitations which may help inform future research. One of the strengths of this study is its focus on understanding the perceptions and concerns of oncologists regarding the role of value in cancer care, which have previously not been adequately represented in the research literature. A limitation of this study is that other perspectives of value in cancer care were not included. Future research should elicit the viewpoints of other stakeholders, such as patients, caregivers, and other health care providers, to obtain a complete picture of perspectives on value in cancer care.

      Conclusions

      Balancing cost and effectiveness is a difficult task for any health condition, and the high stakes of cancer care combined with the wide ranges of cost and effectiveness of therapies makes this task even more difficult. Professional society pronouncements on the importance of considering value reflect the trust most patients will place in oncologists in helping them make that determination. Our results indicate that much work needs to be done to develop consensus-based definitions of “value” through constructive dialogues among oncologists, patients, and health economic researchers. Deriving a common understanding and measurement of value for decision making for oncology treatment is a critical and necessary first step in improving the value of cancer care in the United States.

      Acknowledgement

      This work was presented as a poster at the American Society of Clinical Oncology 2016 annual meeting, June 3–7, 2016 in Chicago, IL, USA.
      Funding: This work was supported by Pilot Project Award # I21 HX001741-01 from the United States Department of Veterans Affairs Health Services Research and Development Program. Support for Dr. Christine Timko was provided by VA HSR&D RCS 00-001 from the United Stated Department of Veterans Affairs Health Services Research and Development Program.

      Supplemental Materials

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