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Myths and Presumptions About Cancer Survivorship

Publication: Journal of Clinical Oncology

Introduction

Delivery of high-quality survivorship care to the growing population of cancer survivors in the United States is often predicated on a mixture of individual provider and survivor factors such as awareness of guidelines and health knowledge risk perception.1-3 Therefore, it is critical to regularly consider commonly held beliefs to assess whether these principles support the best possible outcomes for cancer survivors, with outcomes defined as the results or effects of survivorship care that are most meaningful to each survivor. Commonly held beliefs may create barriers to the advancement of cancer survivorship research by discouraging researchers from proposing hypotheses, developing studies, or receiving grant funding for ideas that contradict assumptions.
With that in mind, examining myths (beliefs held to be true despite refuting evidence) and presumptions (beliefs held to be true for which convincing evidence does not yet confirm or disprove their truth) to establish an evidence base is necessary. Casazza et al previously published on myths and presumptions about obesity, examining the lack of evidence underlying beliefs in this field such as setting realistic goals in obesity treatment is important because otherwise patients will become frustrated and lose less weight (a myth) and regularly eating (versus skipping) breakfast is protective against obesity (a presumption). Drawing on the framework of Casazza et al,4 we have identified several cancer survivorship myths and presumptions which may be perpetuated in survivorship circles and thereby limit efforts to improve cancer survivorship research and care.

Myth: Shared Care Results in the Best Outcomes for Cancer Survivors

Shared care is a term that describes deliberate efforts to coordinate components of survivorship care between specialty and primary care providers (PCPs), practice settings, or electronic health records (EHRs). Multiple reports and manuscripts recommend shared care as the preferred model for survivorship care,5-7 starting with the Lost in Transition report calling for coordination between specialists and PCPs.8 However, available data challenge the belief that shared care is superior to PCP or oncology-led care in several ways.
First, the terminology for and definitions of shared care in published studies vary widely. In noncancer settings, shared care is defined as a treatment approach integrating primary- and tertiary-level care. None of the identified survivorship studies in a recent systematic review, however, adhered to the definition of shared care, and few studies had documented interprofessional collaboration.9-11 Other survivorship research used the label shared care despite a focus on one clinical specialty. For example, in a Dutch study of a shared care intervention for survivors age 70 years and older after colorectal cancer surgery, general practitioners (GPs) scored patients' frailty and health status at multiple time points postdischarge and decided whether interventions were needed; oncology team members were available to answer questions but are not described as otherwise regularly participating in survivors' care.12 Similarly, a retrospective analysis classified survivors as having received shared care on the basis of receiving at least one visit with an oncologist and at least one visit with a generalist within the study time period.13 Yet, it is unlikely that care provided by an oncologist including a single generalist visit or care by a generalist with a single oncologist visit truly represents shared care.
Notwithstanding the differences in definition and measurement, studies of shared care for cancer survivors have reported mixed results. In a study comparing shared care to usual care among 88 Australian men with low- to moderate-risk prostate cancer, shared care was associated with significantly lower costs; these cost differences were largely driven by replacing hospital-based outpatient visits with GP visits. However, there were no differences in distress score, prostate-specific quality of life, patient satisfaction, or unmet needs.14 In a recent scoping review, Mobley et al15 identified four studies reporting on the use of shared care models for childhood cancer survivors. Of these four studies, one reported that shared care resulted in increased adherence to follow-up care, another resulted in lower adherence to guideline-recommended care, and the remaining two produced improvements in different outcomes. A systematic review of the effectiveness of shared care, including eight randomized controlled trials and three descriptive studies, found few or no significant differences between shared care and usual care in survivor quality of life, mental health, performance status, unmet needs, or serious clinical events.16 An overview of systematic reviews by Chan et al17 found few differences in multiple survivorship care outcomes for shared care versus other models, including no reduction in patient or health care system costs.
Two recent publications reported no relationship between physician specialty or the number of follow-up providers and survivor satisfaction or quality of life.18,19 Weaver et al20 found that long-term survivors in shared care reported similar levels of high-quality cancer-related follow-up as did those receiving care from oncologists or PCPs. Doose et al21 found that shared care was not associated with differences in patient-reported quality of cancer care, defined as receipt of necessary medical care, instructions for routine care, and a written cancer treatment summary. A recent study that classified shared care using Medicare claims data to estimate the proportion of oncologist or PCP outpatient visits found no differences in patient-reported experiences for shared care and oncologist-led or PCP-led survivorship care patterns.22
Previous studies suggest that cancer survivors prefer oncology-led survivorship care to PCP-led care.11,23-29 A study of survivors with early-stage breast cancer recruited from an academic center in Toronto found that 93% were satisfied with specialist follow-up care versus 54% with shared care.30 An earlier study of thyroid cancer survivors from a Toronto academic center reported similar results: 90.6% were satisfied with specialist care versus 67.5% with shared care.31 However, one study of survivors with advanced cancer receiving care at teaching hospital-based cancer clinics found that greater PCP involvement was associated with significantly greater patient satisfaction.32 It is possible that shared care will be shown to improve outcomes for specific groups of cancer survivors. However, currently available evidence suggests that the superiority of shared care is a myth.

Presumption: Primary Care Physicians Feel Unable to Provide Survivorship Care

One potential barrier for transition of cancer survivors to primary care settings is the belief that PCPs feel unable to provide high-quality survivorship care.33 This presumption has persisted despite a randomized control trial, published more than 15 years ago, indicating that PCPs perform as well or better than oncology clinicians in caring for early-stage breast cancer survivors.34
Available evidence suggests that PCPs experience challenges in this area, particularly in addressing certain cancer-related care needs.35,36 In a survey of 227 PCPs, most believed that guidelines for cancer survivors are not well defined and about half felt inadequately prepared to deliver high-quality care.37 McDonough et al surveyed 117 PCPs associated with an academic medical center. Although most PCPs were engaged in survivorship care, including 94% managing psychological sequelae of cancer and 84% managing chronic physical complications, 65% felt unprepared to screen for late complications and 36% felt unprepared to screen for recurrence.38 In another survey of PCPs focused on care for head and neck cancer survivors, fewer than one-third indicated they were confident that they could manage late/long-term symptoms or provide appropriate cancer screening.39 A 2016 systematic review reported that approximately half of surveyed PCPs felt unprepared to manage long-term side effects or conduct surveillance for recurrence.36 Based on survey responses, PCPs were less aware of the side effects of several frequently used chemotherapy agents than oncologists.40
At the same time, a number of studies also suggest that PCPs are both willing and able providers of survivorship care.41 In a recent survey of a larger number of PCPs, most believed that they were better able to perform breast and colorectal cancer follow-up, detect recurrent cancers, and offer psychosocial support than their oncology peers.42 Stephens et al43 reported that only 28% were not confident in managing late effects of treatment and only 4% were not confident in addressing chronic comorbidities. In a larger survey of PCPs at a safety net health network being somewhat or very confident in knowledge regarding surveillance testing for breast and colorectal cancer survivors was very common (64% and 72%, respectively), as was being somewhat or very confident in managing late/long-term effects or adverse psychosocial outcomes.44 Other studies have reported similarly levels of confidence among PCPs in providing care for cancer survivors.33,45
Recent data from a national survey indicate that approximately two thirds of cancer survivors received most of their health care from PCPs, either family medicine physicians or general internists.46
Thus, the available evidence related to delivery of survivorship care by PCPs is mixed. PCPs express confidence in their skills to care for cancer survivors, particularly for survivors of more common cancers, and most survivors receive their care from PCPs. However, PCPs may also lack survivorship-specific knowledge regarding management of long-term symptoms and appropriate surveillance.

Myth: Oncology Providers Are Hesitant to Transition Survivors to Primary Care

Some studies suggest that oncologists enjoy taking care of survivors who have completed treatment.35,47 A recently published evaluation of survivorship care stakeholders reported that oncologists were concerned that transitioning patients to PCP survivorship specialists would take away their patient population that brings joy to medicine.47 In that study, one stakeholder noted that substituting diagnostic and treatment visits for survivorship visits in the clinic schedule could cause “burnout… seeing those survivorship types (is) easier. I mean… it's just an easier 20-minute visit than a complicated metastatic disease conversation.” Other research indicates that oncologists have a high level of confidence in their knowledge about survivorship follow-up care components.33
Yet, evidence suggests that oncology providers have less positive attitudes toward survivorship care. In one study of Australian medical and radiation oncologists providing breast cancer survivorship care, most felt that the clinical time they spent on breast cancer survivorship was about right; only 3% and 7%,respectively, wanted to spend more time while 15% and 27%, respectively, wanted to spend less time.48
Oncologists' concerns about transitioning survivors to primary care may be more patient-focused than provider-focused. In a survey of 39 medical oncologists, concern about survivor anxiety was cited as key to decisions about care transition while reimbursement and the longitudinal nature of the provider-patient relationship were reportedly not relevant.49 The perception of survivor anxiety about transition away from oncology has been documented.35,50
At the same time, the large number of cancer survivors followed in primary care settings suggests that oncologists may already care for survivors who are seen by primary care. Using SEER-Medicare data, Snyder et al51 found that in the first year after the end of active treatment, 81.0% of colorectal cancer survivors had a visit with a PCP and 51.6% had a visit with an oncologist. During the fifth year after the end of active treatment, 82.5% had a visit with a PCP while only 24.9% had a visit with an oncologist. The mean number of PCP visits increased from 4.2 in year 1 to 4.7 in year 5 while the mean number of oncologist visits decreased from 1.3 in year 1 to 0.5 in year 5.52 In the Australian survey cited earlier, 68% of medical oncologists and 70% of radiation oncologists had discharged their breast cancer survivors by 10 years after diagnosis.48 Similarly, a survey of Canadian radiation oncologists reported that 55% followed cancer survivors for ≤5 years while 36% followed survivors for 5-10 years, with decreasing visit frequency over time.53
Therefore, the available evidence suggests that the belief that oncologists are hesitant to transition survivors to primary care is a myth. Although many oncologists report enjoying survivorship care, most are not creating barriers to transition but are seeing survivors less often as time from diagnosis increases.

Presumption: Survivorship Clinics Lose Money

In oncology clinical settings, survivorship care may be perceived as insolvent or unprofitable. One recent article called survivorship care a non–revenue-generating service.6 In fact, few studies provide details of reimbursement for survivorship visits, although a growing literature describes barriers to adequate reimbursement for managing physical, social, and emotional side effects or care coordination.6,54-57 A recent publication included a quote from a cancer center key informant that, “we're not able to get insurers to pay for survivorship visits”; this comment was later clarified as focusing on the lack of reimbursement for preparing treatment summaries and care plans.55 Similarly, a study describing survivorship clinics in Wisconsin suggested that mental health services, exercise/lifestyle services, sexual health, and fertility counseling were underrepresented at survivorship clinics because of lack of adequate insurance coverage of these services.57 Yet, profit or reimbursement was not directly evaluated.
Few economic analyses of cancer survivorship program have been performed58; those available suggest that revenues generated by survivorship care programs likely cover or exceed the costs of the programs.59-61 For example, Rosales et al reported that the staff expense per survivorship care visit was $141.73 US dollars (USD), and the average reimbursement per visit was $150.69 USD.59 One recent study of a childhood cancer survivor program emphasized lost profit opportunity, that is, the lost opportunity for reimbursement when survivors are not adherent to screening recommendations.62 Finally, a study suggesting that operating expenses of a clinic for childhood cancer survivors may exceed revenue also acknowledged that full revenues such as those from subspecialty referrals were not included.63 While not economic analyses, other reports have described cancer survivorship services that are reimbursable. These include group wellness program64 and rehabilitation services.65
At the same time, revenue may be lower for survivorship than cancer treatment-related care. Survivorship clinical services may be reimbursed on the basis of evaluation and management codes, whereas reimbursement for those in treatment may include technical codes as well.66 Overall, given the limited evidence on the economics of survivorship care, the belief that survivorship clinics lose money is a presumption.

Presumption: Shared Electronic Health Records Can Address Survivorship Care Coordination Challenges

In the 2018 National Academies of Sciences, Engineering, and Medicine publication Long-term survivorship care after cancer treatment: Proceedings of a workshop, an introductory lecture by Dr Patricia Ganz describes her optimism that advances in the EHR will improve communication and facilitate high-quality survivorship care.67
Although this presumption has been inadequately tested, current evidence regarding whether a shared EHR improves survivorship care coordination is mixed. Importantly, most studies of the EHR for cancer survivors focus on the capacity of an EHR to facilitate creation of a survivorship care plan (SCP).68 Although consolidation and transfer of diagnostic and treatment information may increase PCP or survivor knowledge,69 it is not clear that this results in improved care.70 For example, a study of PCPs found that they thought an EHR-generated SCP was useful for care coordination and appreciated receiving SCP information via the EHR.71 Recently, efforts to create online tools for survivors to generate SCPs have been described.72,73 Potentially, survivors could use a personal health record to share health history, test results, and recommendations between providers. Whether this strategy will improve care or survivor outcomes is still being tested. Furthermore, access to these tools and capacity to use them are likely barriers to their widespread success in fostering care coordination.
The potential benefits of EHRs extend beyond creating SCPs to increasing care coordination or reducing service duplication. However, Klabunde et al74 found that less than one quarter of oncologists reported using EHRs or email to communicate with PCPs, and use of an integrated EHR by oncologists was not associated with greater engagement with PCPs. These researchers suggested that lack of interoperability of EHR systems may impede communication. Interviews with oncologists also suggest that EHRs do not adequately support teamwork of oncology providers, with particular concerns regarding information overload, missing information, and lack of feedback or acknowledgment to close the loop.75 The modular design of EHRs may also create barriers for PCPs to access information from oncologists.76 Overall, there has been little research on whether use of shared or integrated EHRs improves survivorship care.
Given the limited evidence regarding the effectiveness of shared electronic medical records to improve survivorship care or outcomes, the belief that these record systems can address care coordination challenges is a presumption.

Discussion

The purpose of this work was to identify a set of commonly held beliefs regarding survivorship care and examine available evidence to support or refute these beliefs, that is, to assess whether these beliefs are well-founded claims on the basis of available data, presumptions without evidence to confirm or disprove their truth, or myths contradicted by available evidence. We believe that myths and presumptions in survivorship may cause harm. Widely held beliefs may create barriers that discourage survivorship research, ranging from limits on proposing hypotheses to developing research collaboration or studies as well as preparing grant applications or receiving less favorable review scores on applications. Health care administrators and clinical leadership may propagate these beliefs to the detriment of survivors, clinical programs, and providers. Notably, this work focuses on adult cancer survivors but includes a small number of childhood cancer survivorship studies. As the literature base grows, future investigations may be able to examine these populations separately.
This study identified two myths: shared care is preferred, and oncology providers are hesitant to transition survivors to PCP-led care and three presumptions: PCPs feel unable to care for survivors, survivorship clinics lose money, and shared EHRs will eliminate care coordination barriers. These myths and presumptions represent opportunities to research new ways to improve survivorship care. For example, acknowledging that the belief that survivorship clinics lose money is a presumption (and not supported by available evidence) can prompt further studies of the cost of survivorship care and the organizational policies or procedures that may create barriers to its provision. As survivorship science evolves with the growth in the number of survivors, new and novel treatments, and increased length of survival, it is even more essential for survivorship researchers and clinicians to question and challenge such beliefs about survivorship care. Doing so will promote the development of credible evidence on the most effective ways to deliver timely and high-quality care that is affordable, accessible, and patient-centered.77
Furthermore, it is likely that there is not a single optimal approach or best venue for survivorship care. Rather, survivorship care needs to be tailored to cancer diagnosis, treatment, and risk for late effects, as well as local resources and individual survivor preferences. A critical research problem is, therefore, to determine which care delivery models (or model components) result in the best outcomes for specific groups of survivors, in specific care settings with real-world constraints on financial and other resources. This problem raises an even greater need to identify the myths and presumptions that limit the range of research questions and need to be challenged to advance research to improve the lives of cancer survivors.

Disclaimer

This is a US Government work. There are no restrictions on its use. The article was prepared as part of the authors' official duties as employees of the US Federal Government. The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the National Cancer Institute.

Authors' Disclosures of Potential Conflicts of Interest

Myths and Presumptions About Cancer Survivorship

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/jco/authors/author-center.
Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).
No potential conflicts of interest were reported.

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Information

Published In

Journal of Clinical Oncology
Pages: 134 - 139
PubMed: 37972343

History

Published online: November 16, 2023
Published in print: January 10, 2024

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Michael Halpern, MD, PhD, MPH https://orcid.org/0000-0001-8514-6313
Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD
Michelle A. Mollica, PhD, MPH, RN, OCN https://orcid.org/0000-0001-8092-3013
Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD
Paul K.J. Han, MD, MA, MPH https://orcid.org/0000-0003-0165-1940
Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD
Division of Cancer Control and Population Sciences, National Cancer Institute, National Institutes of Health, Rockville, MD

Notes

Emily S. Tonorezos, MD, MPH, Division of Cancer Control and Population Sciences, National Cancer Institute, 9609 Medical Center Dr, Rockville, MD 20850; e-mail: [email protected].

Author Contributions

Manuscript writing: All authors
Final approval of manuscript: All authors
Accountable for all aspects of the work: All authors

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Michael Halpern, Michelle A. Mollica, Paul K.J. Han, Emily S. Tonorezos
Journal of Clinical Oncology 2024 42:2, 134-139

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