Cancer Patient Perspectives on the Use of Clinical Pathways and Shared Decision-Making in Cancer Care

Abstract: The United States has one of the most expensive heath care systems in the world, and the costs of cancer care are rising faster than costs in other medical fields. Value-based care is being implemented in many health care sectors in an effort to deliver high-quality care that is also more cost-effective. Use of clinical pathways is one strategy being used by many payers to encourage oncology care providers to standardize care. However, the patient perspective has not been incorporated into the development and use of clinical pathways in cancer care. This phenomenological qualitative study explores patient perspectives regarding clinical pathways and their use as a shared decision-making tool in the delivery of cancer care. Results showed that participants were generally unaware of the use of clinical pathways. Participants acknowledged the value of standardized care but emphasized their preference for shared decision-making and the importance of individualized care that was not limited by clinical pathway recommendations. Implications for practice, research, and policy are discussed. 

Acknowledgments: We are grateful to the cancer survivors that participated in this study.

The United States spends more money on each individual patient medically than any other nation, making it the most expensive health care system in the world.¹ The costs of US cancer care, in particular, are rising more quickly than costs in other medical sectors,² increasing at a rate of 15% annually,³ and accounting for 5% of total US health care spending.⁴ Per person costs of cancer care exceed all other diseases.⁵ With over 15.5 million survivors,⁶ and an aging population living longer and at greater risk of being diagnosed with cancer, the costs of cancer care continue to grow. 

Drug expenditures are a leading health care cost driver, and antineoplastic agents currently represent the largest cost to Medicare or hospital pharmacies.⁴ Drug prices in the United States are typically 2 to 6 times more expensive than in other industrialized nations.⁷ In fact, 20% of cancer costs in the United States come from drugs developed in the last 5 years.⁸ While there are more cancer treatment options available than ever, there may be only minor differences in efficacy and toxicity yet wide variations in cost.⁹ Although the price of drugs has played a major role in the rising costs of cancer care, there are multiple contributing factors. An increasing prevalence of cancer in the overall population has been suggested as a major cost driver.⁹ Additionally, higher costs have been attributed to the greater availability of more expensive treatments and more aggressive treatment recommendations, as well as the shift in cancer treatment location—more patients are seen in the hospital for cancer care vs being seen in outpatient clinics.¹⁰

In response to these rising costs, there has been an increasing demand for high-quality, value-based cancer care. Although various stakeholders define value differently, perhaps one of the most simple definitions of value in health care is care that is delivered at the lowest cost with the lowest toxicity yet maintaining the highest quality.¹¹ Although this value definition does not incorporate a host of factors that may be important to patients such as quality of life, social and emotional stressors, or logistical concerns, it does illustrate an overall desire to improve population health while reducing the cost burden to the health care system. 

One mechanism that has been widely implemented to drive value-based care is the clinical pathway. Clinical pathways differ from clinical guidelines in that guidelines provide information for all available treatment options that have been recommended by professional societies or are evidence-based.¹² Clinical pathways are a management tool that outline a selected subset of evidence-based regimens for delivering cancer care to patients based on specific presentations such as state and stage of disease.¹³ Clinical pathways include specific treatment details such as the names of medications, appropriate dosing levels, and administration schedules.¹³ Pathways can be used to promote patient adherence to prescribed treatment plans, reduce variation in the ways in which different patients receive care, enhance communication between patient and provider, and promote patient education about complex treatment decisions.¹⁴ Indeed, clinical pathways have been increasingly implemented by third-party payers, health care institutions, and commercial organizations to reduce treatment variation and control costs.¹⁴ A 2010 review comparing clinical pathways with usual standards of care found that clinical pathways were associated with reduced in-hospital complications, improved documentation of treatment, and an overall decrease in hospital costs.¹⁵

However, there are concerns regarding the overall benefit of clinical pathways to patients. In an era of personalized medicine, clinical pathways may not always fit the individualized needs of patients. Payers have a financial interest in cost containment, which may sometimes conflict with clinical judgment¹⁶ and patient values and goals. There is also a movement toward incentivized pathways, which provide financial benefits to providers who place patients on pathway-specified treatment regimens. These incentivized arrangements can erode patient trust, as the patient may question the underlying motivation of the provider. Although a provider may choose to override a specified pathway, it can take additional time for approval from payers, which ultimately delays the delivery of appropriate patient care.¹⁶

Although initially created to reduce variability in treatment, multiple pathways from various institutions can mean that patients with identical diagnoses, but with different insurance coverage, can receive different on-pathway regimens.¹⁴ Additionally, not all companies that create, nor parties that utilize, clinical pathways do so in a transparent manner. Patients may not have access to the evidence-base behind each pathway nor be informed of alternative treatment options from which to choose. 

Finally, pathways do not incorporate all aspects that patients take into consideration when making treatment decisions, as briefly noted above. Patient values are not typically considered in pathway creation, and pathways can create a one-size-fits-all approach to cancer care that does not take into consideration the unique circumstances of individual patients. In addition to clinical pathways, it is widely agreed that shared decision-making is a cornerstone of providing outstanding patient-centered care.¹⁷ Shared decision-making has been shown to improve patients’ understanding of treatment options, resulting in more conservative care choices and leading to lower health care costs.¹⁸ 

Ultimately, clinical pathways may make it difficult for patients and providers to engage in a shared-decision making model based on evidence, which simultaneously addresses the needs, values, and preferences of the patient. The aims of this study were (1) to describe cancer patient understanding and personal experiences of clinical pathways and (2) to explore cancer patient experiences of shared decision-making and the use of clinical pathways in cancer care.

Methods

Participants

This exploratory study utilized phenomenological qualitative methodology to understand the cancer patient experience and perspectives regarding clinical pathways and shared decision-making. Participants were recruited from the Cancer Experience Registry (Cancer Support Community’s community-based online platform designed to collect patient-reported data), and through the Cancer Support Community’s affiliate network. 

Study Design

One-hour interviews were conducted with cancer patients and survivors who were from 1 to 5 years post-diagnosis. All participants provided informed consent and agreed to have their interviews recorded and transcribed for notetaking and analysis purposes. All interviews were conducted by trained researchers; interviews were transcribed professionally for accuracy. The study was approved by an independent institutional review board (Ethical and Independent Review Services).

A total of 21 interviews were conducted using a semi-structured interview guide. Interviewers introduced the concept of clinical pathways in 2 stages. First, interviewers explained the basic concept of clinical pathways, without discussing provider incentivization, in the following way: “Clinical pathways are tools used by health care teams in making treatment decisions. They are designed to optimize the best outcomes and minimize costs. These are standardized evidence-based guidelines that payers or insurers encourage doctors to follow. Have you heard of this before?” 

After determining basic participant knowledge and awareness of clinical pathways, the interviewers introduced information in the second stage about incentivization for providers: “Some clinical pathways may be incentivized, meaning that they are tied to different levels of reimbursement to the health care provider. Insurance companies may pay more to hospitals or doctors within a network to use a given clinical pathway.”

Data Analysis

All coding was done in NVivo 8. Coding was done independently by 2 members of the research team; any differences were reconciled by the third author.

Results

As shown in Table 1, the majority of participants (N = 21) were female (86%), older in age (55-70 years, 67%), and white (95%). This sample was highly educated, with 48% having completed a 4-year college degree, and 38% having a master’s degree or more (PhD or MD). Almost 60% of the participants were 1 to 2 years post-diagnosis, and all had received at least first-line adjuvant treatment. 

When asked directly, none of the participants were familiar with the term “clinical pathway.” Most participants hypothesized that clinical pathways were treatment guidelines authorized by cancer organizations (eg, National Comprehensive Cancer Network guidelines). None of the participants knew or guessed that clinical pathways might be informed by or supported by third-party payers. However, the majority of participants (n = 13; 62%) had heard of treatment guidelines and believed that the purpose of treatment guidelines was to ensure that all people receive the same standard of care, consisting of clinically appropriate, life-prolonging therapy. Participants who were familiar with treatment guidelines also expressed concern that other patients, particularly those of lower socioeconomic status, lacked access to excellent care. After interviewers explained clinical pathways in more depth, most participants believed clinical pathways were highly positive, ensuring that all people, regardless of their socioeconomic status, have access to the best oncologists and receive the same standard of care for their tumor type. For example, one participant expressed the following thoughts about clinical pathways ensuring treatment equality:

If there is one thing that I wish [people knew…] that has to walk in there today and be told that he has lung cancer, I wish he [any patient] could go to a central place where they represented him. They didn’t represent the insurance companies, they didn’t represent the doctors, they didn’t represent anybody but him. That’s what [clinical pathways] could do.

All participants stated their belief that clinical pathways are structured for the most common presentation and disease progression scenarios. They believed that treatment guidelines and clinical pathways represent only the first, most basic possible solution for their particular cancer, and were only a starting point for oncologists, as they developed a personalized treatment plan. As shown in the following quote, participants recognized the need for standardization:

I guess there has to be some standardization because it could just run amok. I mean, health care could just be chaos, so I guess across the board there has to be standard treatment, standard methods for handling diagnosis, surgeries, and that type of thing. I get it. I get the increased outcome, the decreased cost.

Although, all participants recognized the need for standardization, the majority (n = 15; 71%) believed that their own treatment went well beyond the most common scenarios clinical pathways address; they felt this personalization beyond standard guidelines was what made their treatment exemplary. Fourteen participants (67%) also believed that the best possible care resulted when both patients and their physicians had at least some choice in treatment planning, both initially and during/after the selected course of treatment had begun. These participants also highly valued the different elements of shared decision-making, including being educated by their provider about multiple treatment options (n = 12; 57%), conducting oncologist-guided research into those options (n = 12; 57%), and sharing treatment goals and life demands with oncologists in order to jointly develop the most realistic treatment plan for them (n = 11; 52%). Among respondents who believed that the best possible care resulted when both patients and their physicians had at least some choice in treatment planning, they noted that engaging in some level of shared decision-making was central to maintaining the trust they had in both their cancer care team as well as the hospital in which they received care. 

Overall, participants had negative reactions to incentivization, which affected their impressions of clinical pathways more broadly. The majority of participants (n = 16; 76%) believed that any incentivized treatment would not be the best treatment that treatment guidelines mandate. Instead, participants felt that incentivized pathways were over-standardizing treatments, with a primary goal of saving the provider/organization money, which could potentially lead to negative health outcomes. For example, one participant expressed a strong negative reaction to the idea of incentivization: “Incentives from the insurance companies? I think that’s a terrible idea…I don’t think that that should have anything to do with it, incentivization.” 

The majority of respondents (n = 18; 86%) reported that they would lose at least some trust in a cancer care provider who used an incentivized clinical pathway. Fifteen participants (71%) believed that a physician who recommended incentivized pathways to patients may be primarily aligned with the interests of the organization and/or payer and therefore may prioritize financial outcomes over optimal care. As a result, they worried that tailored care would be denied to patients, even when it was more appropriate and when it could lead to improved overall outcomes. 

Discussion

This exploratory qualitative study found that participants were generally unaware of the implementation of clinical pathways and what these pathways mean in relation to their personal cancer care. However, once clinical pathways were explained, most participants were open to the concept and could see the benefit of standardized care, particularly for those with lower socioeconomic status, in terms of ensuring treatment equality. 

Overall, participants highly valued shared decision-making and ensuring that treatment decisions remained personalized and tailored to the individual and not constrained by clinical pathway implementation. Participants indicated that attaching provider incentives to the use of clinical pathways could undermine patient-provider trust. Some participants also felt that trust in the cancer care team could be compromised by the use of clinical pathways. For example, if the provider only offers one treatment plan option, the patient may view this as the only available treatment plan option, and it could conflict with their ability to make personalized treatment decisions. Such assumptions could compromise the patient-provider relationship; educational materials and other supportive programming may be needed to help clarify clinical pathways and the role of incentives.

This study provides a number of meaningful implications for practice, research, and policy. In practice settings, there is a need for patients to be educated about the purpose and potential value of clinical pathways, including the value of standardization and the ultimate goal of providing high-quality, evidence-based care. It is also clear that shared decision-making is highly valued by patients. This is an important point, given that shared decision-making requires transparency on each stakeholder’s part. Efforts need to be made to support clinicians in creating more transparency around clinical pathways and incentives. Cancer care providers also need support and/or education regarding the best way to communicate with patients in order to identify patient values and goals. There is a need for patients to also be supported in advocating for treatments that meet their individual needs and preferences.

Certain limitations should be considered when interpreting study results. Findings are unable to be generalized to the broader cancer patient population, given that our sample was drawn from a single source that was small, highly educated, and limited in racial and economic diversity. There is also researcher influence inherent in any qualitative study, although we sought to limit any potential bias by providing evidence-based information about clinical pathways and allowing patients to lead the discussion as we explored their thoughts and beliefs with them. It should be noted that the second qualitative question focused on incentives offered to providers from insurance providers. We are aware that this is not the only source of provider incentives pertaining to treatment delivery; however, it may have been interpreted this way by participants. Therefore, future research should clearly explain other sources of incentives, such as those from pharmaceutical companies, that may also impact provider treatment recommendations, in order to avoid potential response bias.

Conclusion

As illustrated in this study, payer-incentivized pathways may potentially undermine patient trust in cancer care providers. As such, health care providers should ensure that their patients understand how they arrived at their treatment recommendations. Ideally, cancer treatment recommendations would be based on the values and goals of the patient, best evidence available, and appropriate clinical guidelines. Payers need to allow for modifications to and deviations from clinical pathways and, at the same time, encourage standardized, high-quality, evidence-based care.

References

1. Global Burden of Disease Health Financing Collaborator Network. Evolution and patterns of global health financing 1995-2014: development assistance for health, and government, prepaid private, and out-of-pocket health spending in 184 countries. Lancet. 2017;389(10083):1981-2004. 

2. Dizon DS, Krilov L, Cohen E, et al. Clinical cancer advances 2016: annual report on progress against cancer from the American Society of Clinical Oncology. J Clin Oncol. 2016;34(9):987-1011.

3. Schickedanz A, ed. Assessing and Improving Value in Cancer Care: Workshop Summary. Washington, DC: Institute of Medicine; 2009.

4. Schnipper LE, Bastian A. New frameworks to assess value of cancer care: strengths and limitations. Oncologist. 2016;21(6):654-658. 

5. Adelson KB, Velji S, Patel K, Chaudhry B, Lyons C, Lilenbaum R. Preparing for value-based payment: a stepwise approach for cancer centers. J Oncol Pract. 2016;12(10):e924-e932. 

6. National Cancer Institute. Cancer statistics. cancer.org website. https://www.cancer.gov/about-cancer/understanding/statistics. Updated April 27, 2018. Accessed October 16, 2018.  

7. Bach PB, Pearson SD. Payer and policy maker steps to support value- based pricing for drugs. J Am Med Assoc. 2015;314(23):2503-2504. 

8. Quintiles IMS Institute. Global oncology trends 2017: advances, complexity and cost. https://morningconsult.com/wp-content/uploads/2017/06/QuintilesIMS-Institute-Oncology-Report.pdf. Published May 2017. Accessed October 16, 2018.  

9. Tangka FK, Trogdon JG, Richardson LC, Howard D, Sabatino SA, Finkelstein EA. Cancer treatment cost in the United States: has the burden shifted over time? Cancer. 2010;116(14):3477-3484.

10. Eagle D. The cost of cancer care: part I. Oncology (Williston Park). 2012;26(10):918-924.

11. Schnipper LE, Davidson NE, Wollins DS, et al. Updating the American Society of Clinical Oncology value framework: revisions and reflections in response to comments received. J Clin Oncol. 2016;34(24):2925-2934. 

12. Newcomer LN, Malin JL. Payer view of high-quality clinical pathways for cancer.
J Oncol Pract. 2017;13(3):148-150. 

13. Gesme DH, Wiseman M. Strategic use of clinical pathway. J Oncol Prac. 2011;7(1):54-56.

14. Zon RT, Edge SB, Page RD, et al. American Society of Clinical Oncology criteria for high-quality clinical pathways in oncology. J Oncol Pract. 20717;13(3):207-210.

15. Rotter T, Kinsman L, James E, et al. Clinical pathways: effects on professional practice, patient outcomes, length of stay and hospital costs. Cochrane Database of Syst Rev. 2010;3:CD006632. doi:10.1002/14651858.CD006632.pub2

16. Balch AJ, Balch CM, Benson A, Morosini D, Rifkin RM, Williams LA. Recommendations for the role of clinical pathways in an era of personalized medicine. Am J Manag Care. 2016;22(5):SP176-SP180.

17. Barry MJ, Edgman-Levitan S. Shared decision making—the pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780-781.

18. Fowler FJ Jr, Levin CA, Sepucha KR. Informing and involving patients to improve the quality of medical decisions. Health Aff (Millwood). 2011;30(4):699-706.