Interfaces Across the Cancer Continuum Offer Opportunities to Improve the Process of Care

There is little question that medical care delivery in the United States and Canada struggles to achieve its full potential to reduce morbidity and mortality (1,2). The Institute of Medicine's 1999 report titled Ensuring Quality Cancer Care and its 2001 report Crossing the Quality Chasm galvanized interest in improving cancer care specifically and health-care delivery in general (3,4). Although the chasm between what we know and what we do in medical care was described by the Institute of Medicine at the turn of the millennium, systematic assessment of quality has been a concern for more than a generation (4–6). Donabedian (7) wrote about the complexities of health-care quality in the early 1980s and defined it as the ability of the care system to deliver the health benefits of treatments while reducing their adverse consequences. In this supplement, we explore the processes involved with comprehensive cancer care and emphasize the interfaces between providers, providers and patients, and health-care organizations. Consistent with Donabedian's conception of the health-care process, these interfaces are affected by the structure of the environment in which they arise as well as by the practices, organizations, and communities where the processes occur. This concluding article summarizes how the supplement identifies the challenges at the interfaces of cancer medical care practice and proposes how further research regarding these interfaces could have implications for the goal of achieving a system of cancer care that is safe, effective, patient centered, timely, efficient, and equitable (4). The supplement is divided into three sections. The introductory article (2) entitled, Toward Improving the Quality of Cancer Care: Addressing the Interfaces of Primary and Oncology-Related Subspecialty Care. (section I), defines terminology and discusses types and transitions in care that occur across the cancer continuum. Types of care, including detection, diagnosis, treatment, survivorship, and end of life, are the broad areas of the cancer continuum that focus on achieving a specific therapeutic goal. Transitions in care refer to the activities that connect these broad types of care. We further delineate types and transitions as collections of discrete processes called steps and interfaces. Steps in care usually involve a provider visit, whereas interfaces are the patient and provider interactions that link steps and involve transferring information and responsibility. Actions at the interfaces of care include appointment scheduling and communicating about test results, therapy, and/or the next step in care. The articles in section II summarize the challenges that arise at the interfaces of care during four major phases of the cancer care continuum—disease presentation to diagnosis, diagnosis through primary treatments, treatment through survivorship in curative settings or palliation in noncurative situations, and end-of-life care (8,9,10,11). The articles in section III begin by exploring how the care environment affects the interfaces during cancer screening (12,13). Section III also examines ways to implement and evaluate systematic approaches such as multidisciplinary care teams and information technologies that directly address the problems of communicating information and transferring care responsibilities along the care pathway (14,15,16,17). Taken as a whole, this supplement considers what is known about problems at the interfaces of cancer care and suggests avenues for further research. We suggest that consideration of these interfaces provides insight into care systems and a way to identify potential for improvement in the care process that will not be achieved by continuing to focus on the steps in care alone. In the supplement's introductory article, we posed five questions summarized here and elaborated below: 1) whether there is evidence of a problem at the interfaces of care, 2) whether there are tested solutions, 3) how the environment of care affects the problem, 4) what research is needed, and 5) design implications for needed research. Here, we examine the answers to those questions. Yes. There is evidence that problems exist at the interfaces of cancer care, including between providers and patients, primary and subspecialty care providers, and their respective organizations. There is an intuitive association between problems and potential improvements in care processes, but how to measure the impact of these issues on specific quality metrics and whether they can be influenced remain to be tested. Table 1 summarizes some of the problems within each part of the cancer care continuum as described in the articles in sections II and III. Anhang Price et al. (12) and Zapka et al. (13) not only suggest that organizational structures can influence interfaces between screening and disease detection but also note that the proportion of patients lost to screening and follow-up at the various interfaces in these processes is unknown. During the symptoms to diagnosis phase of care, Nekhlyudov and Latosinsky note that 90% of cancer-consistent symptoms presenting to primary care providers are not actually associated with a subsequent cancer diagnosis (8). That creates a huge clinical challenge for the interaction between primary and subspecialty care (Table 1) [Nekhlyudov and Latosinsky (8)]. From diagnosis through treatment, Sussman and Baldwin (9) note that approximately 40% of patients have unmet needs for information about their disease or treatment or psychosocial support. During treatment through survivorship, Grunfeld and Earle (10) note that we know little about the details of the survivorship care plans that are widely recommended but rarely used. At the end-of-life phase, Han and Rayson (11) note that the overlapping functions, knowledge, and responsibilities of physicians during end-of-life care increase their role ambiguity. Furthermore, the ambiguity can be exacerbated by the emotional and situational stress the patient and their family suffer at this critical stage of their life. The reviews demonstrate some of the challenges at the interfaces of care and also emphasize that there is a great deal of research left to be done within each part of the cancer care continuum that may begin to ameliorate the problems. Problems and needed research at interfaces of care across the cancer continuum Problems and needed research at interfaces of care across the cancer continuum But there are common problems across the continuum as well (Table 2). Almost all authors note the need for better knowledge of where breakdowns occur within the steps and interfaces of primary and specialty cancer care. The authors realize that we need validated and specific metrics of good care at the various interfaces. There seems to be universal concern about role ambiguity among providers. Providers vary in skill, and cancers vary in how they are diagnosed, evaluated, and treated. Who is responsible for each step in care and how necessary information is communicated among providers and between providers is a concern at each phase of care. The authors also note the need to better understand how structural characteristics of organizations and practices influence the interfaces of care. Together, these issues support the overall thesis of this supplement, suggesting that the interfaces of care are a window into care structures and processes. The challenges at these interfaces, and their potential evaluation and solutions, could profoundly affect care delivery because they appear to have the following effects: 1) role confusion, 2) inadequate exchange of verbal or written information critical to completing the next step in care and/or the management of comorbid conditions, 3) inappropriate or missed referrals, and 4) inefficient diagnosis and treatment of the cancer. We suggest that efforts directed toward understanding how to objectively assess and measure care at the interfaces and subsequently resolve the ambiguities and inadequacies arising in the process of cancer care should be a high-priority research and programmatic agenda for many years to come. Crosscutting problems and research at the interfaces of care Crosscutting problems and research at the interfaces of care No, but there are observational studies and some relevant comparisons. Observational comparisons of large systems of care do not show major differences in stage at diagnosis among capitated and indemnity plans within the United States, so the effect of insurance type on the overall process of care is unclear. Educational interventions regarding appropriate workup of symptomatic presentations have been suggested but not rigorously tested. A randomized trial of shared care in Denmark tested the effect of specialty–primary care communication regarding therapy and side effects during initial treatment and reported increased numbers of primary care visits and greater patient satisfaction but no major differences in technical quality of the care delivered (18). Several trials of care plans suggest the potential for improvement in the transition from treatment to survivorship [Grunfeld and Earle (10)]. Some evidence among long-term survivors also indicates that clearly communicated guidelines for follow-up and survivorship care from specialists to primary care physicians result in similar cancer care and outcomes as that delivered by specialists [Grunfeld and Earle (10)]. This is what the authors could find. Although there may be more, it is apparent that tested interventions that affect the interfaces of care are rare. By environmental influence, we mean not only the immediate environment of the practice but also the wider environment of the organization and community. An overarching theme of this supplement is that progress along the cancer care continuum is affected by contextual factors, including provider characteristics, family structure, health-care organization composition, and national policy. Nekhlyudov and Latosinsky first raise the issue of environment when they point out the structure–process–outcome paradigm of Donabedian and apply it to the diagnosis to treatment phase of care (8). Anhang Price et al. (12) return to this issue in section III where they link an ecological model of influences across the continuum through the description of predisposing, enabling, and reinforcing factors that influence the behavior of both providers and patients. This conceptualization allows us to begin classifying targets for intervention and demonstrates how manipulations of the care context could influence the overall process in a way that can be communicated and shared. Many have described relevant contextual factors including social and environmental conditions, care settings, and systems, as well as individual resources (6,7,19). The challenge has been to understand and conceptualize how these factors might affect care or guide improvement efforts. Wagner (20) introduces the important consideration of encouraging patient self-management, information systems, and decision support as ways to improve care, and Anhang Price et al. describe potential methods to identify and communicate these influences and focus interventions. Fennell et al. (16) propose an explicit model of multidisciplinary team care that links organizational theory and Donabedian's conceptualization of structure, process, and outcome. They note that ultimately team performance must be linked to care processes and patient outcomes, and we agree. Throughout this supplement, we contend that efforts to improve care must consider environmental factors, such as those suggested by Fennell et al. But this consideration cannot simply exist in the abstract. We need to examine whether and how policies and organizational structures translate into effects that predispose, enable, or reinforce the behavior of individuals. It is the behavior of patients and providers throughout the process of cancer care that must be affected to improve patient outcomes. Consideration of the effect of environmental factors needs to include understanding how incentives work to predispose, enable, or reinforce care. We have seen in studies of the larger US environment that the insurance type (eg, fee-for-service, managed care) does not necessarily change the stage at diagnosis of cancers in the populations served. We have also seen through this supplement that having a single-payer medical system such as that exists in Canada also does not solve the problems at the interfaces of care. Perhaps stage at diagnosis is the wrong metric for comparing the effect of incentives and structures of the health-care system, so there is a need for research on metrics that will reflect their effects consistently. Or perhaps, we need to understand whether broad system structures like fee-for-service, capitation, or single-payer systems influence improvements at the level of interfaces in the cancer care processes. Increases in information exchange and care coordination involve committing scarce resources, including the time of busy providers. Whether more targeted incentives directly addressing, for example, referral and communication during diagnosis or collaboration during initial treatment, will serve to improve care processes remains to be explored. Fennell et al. suggest that external factors affect team focus, structure, and process in ways that lead to better treatment processes and patient outcomes. But Fennell notes that these relationships need to be tested. Does multidisciplinary team care lead to better treatment? Can primary and specialty care be held jointly responsible for outcomes in a population of patients? How much do regulatory and payment incentives serve as barriers and facilitators to improving health care provider interfaces? We suspect that promoting unrealistic policies and mandating providers to do additional work on top of busy will be so it is that appropriate structures and incentives to address the problems is an for research. Sussman and Baldwin emphasize that much of the research in of care interfaces is in settings the United Grunfeld out the need to understand how care plans to be or to the of the delivery system or context in which they are a care in Canada where is but for a may be will from a US where has been a challenge for those with for care may be than in We need to more about the of care such as the care model and in health systems such as Canada and where primary care as the of the processes and structures need to be tested in the US health-care system where specialists are more and care are not care systems with research like the Cancer and the may have to support research the effects of approaches directed to providers, and the care But the must be to single-payer systems and the of care in the United a great deal more must be done to test and these must consider the effects of the health-care systems in which they are The effect of the environment on the cancer care process is of many for research into improving interfaces and care across the cancer care continuum. The specific challenges across the cancer continuum are summarized in 1 and along with some suggested research. example, additional of the symptoms to a cancer diagnosis may the primary care provider to more a intervention to improve and its in 1 and is that we need to test of communication and for primary care during the evaluation of symptomatic of care in need to be in cancer care, including the of primary care might also consider whether the of primary care at phases of multidisciplinary cancer treatment treatment or in an to and needs where they are to improve care processes. to problems at the interfaces of care and their role in communication and the of responsibilities need to be a research the potential to communication issues along the cancer care continuum. There also needs to be evaluation as to how patients can and information their specific needs at in the continuum. in the are a of including issues by Fennell et al. et al. and et al. in their respective example, may need to identify and a broad of that are to in the care must be they can be into the design of but we know that studies need to include clinical (eg, outcomes (eg, quality of life, satisfaction with care, and impact (eg, including the to the patients and their regarding which types of shared care are or and to these or and will be an important in the of model of cancer care Fennell et al. that many cancer are to multidisciplinary care teams there is little work characteristics that are critical to or that the links between team performance and patient outcomes reflect that there structures that the care team there scheduling approaches that it for a of there tested information that a common and of Does patient to all or some of this et al. note that information can address problems at the of cancer but that the will be and more to lead to improvements in processes there is what are needed and providers are involved in the processes and/or this work remains to be we need better and methods that of the influences on the interfaces of care. need to guide research and Han and for example, questions at the end of that need to be we are to begin exploring the types of needed to in shared care at the end of life. Many cancers are with targeted which are well and involve some level of specialty care for The to examine these interfaces in the context of a disease model may to translate work done in to cancer care processes as a of improving research in this authors suggested that is needed to understand the influences in primary and specialty care interfaces. We with Han et Zapka et and Anhang Price et al. that these are not and research are needed to evaluate these influences in et al. identify an of potential research that can be for observational studies and randomized trials exploring the issues in this They point out that some will be better for the problems at the but will be more appropriate for that of in care delivery systems are also There must be regarding the of interest patients? health-care and the of that for the of organizational characteristics care at the are Anhang Price et for example, note the of organizational relevant to health-care processes. The research to address the effects described in this supplement are to be and because they must of practices and organizations as a of notes that randomized trials are when evidence for is needed and that we cannot that be the need for on which to et al. also note that they may be in the of and this supplement, we have to the five questions posed at the answers have implications for work to improve cancer care there is a great deal of work it is to consider how that work might affect cancer care processes. about the steps in care and how to for example, that the primary care how to a well or the appropriate for are and in is not to improve the process of care We are suggesting that the interfaces between providers, providers and patients, and health-care organizations across the cancer continuum are as important as the many steps in health care because they link these steps a care process on individual patient outcomes and It the care process to achieve cancer care. is of no a diagnosis, and diagnosis does not improve to comprehensive and This seems but the care process is not that Although there is a large of evidence about what physicians should do at each step in care, the authors in this supplement a of about the interfaces that connect the steps in care and a of interventions to address the problems In their Crossing the Quality the Institute of Medicine recommended characteristics of an care system for the that is safe, effective, patient centered, timely, efficient, and equitable (4). In this supplement, we to suggest how consideration of the interfaces of care could to achieving that or of communication at the interfaces of care can in care and lead to potential or that is not of which can lead to Improving communication across the interfaces could improve patient by that each provider a patient what has been done This knowledge the that is and the next step is Addressing problems of communication at the interfaces of care could reduce problems of to do what is The of communication that comorbid may not be for or at The specialty focus on the cancer may their of the or disease simply because they do not have the and insight of the the primary care provider with a may not understand its potential to cancer The of the patient from provider to the next the of cancer treatment because no provider has all the it creates and when information is not and is not methods to necessary information among providers, is responsible for each step of the care, and the that there is a common could reduce and a common that the patient is at the of care by because no all that are Addressing the interfaces of care to achieve a more system also improve the of the of and not the cancer. Addressing the issues so that comorbid are also increase the that the of patient was and not the cancer. at the interfaces are when the that providers and patients need to is not and not well Nekhlyudov and Latosinsky point out the need to diagnosis in a way that to patients. Improving interfaces of care is to affect care at the of the continuum as well as consideration throughout the a necessary metric [Nekhlyudov and Latosinsky (8)]. The of communication at the interfaces of care also to problems of when are because the next does not know what was done or the are Sussman and Baldwin point out that the primary care to from the cancer therapy Whether this is needs because evidence from the care system suggests that primary care providers patients more than during the of cancer therapy in primary care visits are communication is both and Addressing the interfaces could reduce and wrong on or knowledge and cancer care more We have not whether problems at the interfaces of care are across but it is not We for example, that patient in the United States have to address the problem of to care in when there is to care, it is that all systems achieve the cancer care or the outcome. the question whether a focus on the interfaces understanding of the differences in care. It is apparent that research with to the interfaces of care could raise issues relevant to of the Institute of Medicine's for health-care Addressing these issues could us to an cancer care The articles in this supplement problems at the interfaces of providers, providers and patients, and health-care organizations that should a high-priority for cancer research for role are information exchange is and and the provider and patient needs for information exchange are Furthermore, the problems at the across the continuum of care and are affected by factors, including individual and relationships and But the differences in the three should be further and tested with interventions. achieve equitable care and improve the of safe, efficient, and care, we need to understand the 1) methods and effects of information exchange at the between primary and subspecialty care, 2) methods and effects of explicit of at the between primary and subspecialty care, and 3) methods and effects of organizational and change that and incentives for primary and subspecialty care providers to in cancer care. to address the challenges at the interfaces may be to resources, for patients and providers, and clinical outcomes. The question we raise is whether the interfaces of care can a focus for improving the cancer care Although the issues at the interfaces of care are studies can systematic information on methods and to information and the interfaces more and while their to the health outcomes that providers and patients to can also which organization and policies and This work is evidence from the and health system It also is not only the and social but also the of and organizational and We that this supplement of the provides a critical point for information and better ways to improve the primary and specialty care interfaces that affect care across the cancer continuum. Cancer Institute

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