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Cancer outcomes research.

If the central business of cancer outcomes research is the pursuit of information relevant to a range of decision makers (1), i.e., patients, families, providers, payers, regulators, standards setters, and researchers, several questions quickly arise. What is the nature and scientific quality of the information currently being produced? How do we enhance the rigor and relevance of cancer outcomes research, with a concern not only for the methodological and empirical foundations but also its potential and actual contributions to decision making? What is the research agenda to carry us forward? The preceding 10 papers of this Monograph sought to address the first question above—the quality of the information— through empirically grounded reviews and evaluations of the published literature. This final paper, authored by staff at the National Cancer Institute (NCI), examines aspects of the remaining questions. It identifies the elements of a research agenda intended to generate better scientific products and information to enhance the quality of cancer care decision making and ultimately the quality of cancer care. We have said that the purpose of cancer outcomes research is to describe, interpret, and predict the impact of interventions and also other influences on “final” outcomes that matter to decision makers (1). Such outcomes include not only survival and disease-free survival but also important nonbiomedical, patientreported outcomes such as health-related quality of life (HRQOL), patient perceptions of and satisfaction with health care, and the economic burden attributable to cancer and its interventions. Final outcomes are distinguished from both intermediate outcomes (e.g., appropriate cancer screening) and clinical outcomes (e.g., delay in tumor progression), which are frequently the direct targets of, and indicators of success for, cancer interventions. However, the importance of intermediate and clinical outcomes for cancer decision making rests ultimately on the extent to which they can be convincingly linked to improvement in final outcomes such as a reduction in mortality. In order for outcomes research to achieve its potential to improve cancer care delivery, three prerequisites apply: 1) technically sound and decision-relevant final outcome measures; 2) persuasive evidence about the effect of interventions on those outcomes, with due attention to the causal linkages among intermediate, clinical, and final outcomes; and 3) the willingness and ability to translate findings into information that decision makers find understandable and compelling. This Monograph has employed a tripartite framework for categorizing and characterizing the arenas of application for cancer outcome measures; see Table 1 here and its more expansive counterpart in the paper that introduces the Monograph (1). Macro-level studies chart population trends in cancer-related outcomes and progress against the cancer burden. Meso-level studies investigate the impact of cancer and cancer-related interventions on outcomes, with a focus (depending on the study’s specific purpose) on determining the efficacy of candidate interventions under controlled circumstances or in the community; describing patterns of cancer care, including the extent to which quality-enhancing services are embraced; or identifying effective or cost-effective interventions in the context of program evaluations or priority-setting analyses. Interventions include not only specific cancer prevention, detection, or treatment services or programs but also changes in the organization, financing, or delivery of cancer care that may influence outcomes. Micro-level studies examine the use of cancer outcome measures and measurement tools to enhance the quality of information available for patient–clinician decision making. There is no intent here to imply that the topic areas in Table 1 are to be regarded as subsets or components of some larger, all-encompassing enterprise called “cancer outcomes research.” Rather, we seek to show how the latter can contribute substantially to a variety of analyses within each of these arenas, especially regarding the measurement of outcomes that matter to decision makers. Because this paper attempts to identify not only the major opportunities and challenges confronting cancer outcomes research but also specific pathways forward in a number of domains, it takes the form of an extended, multipart essay rather than a summary document that only highlights the tasks ahead. While the sections and subsections below proceed in a sequence that we believe is natural and cumulative, they can be pursued in any order or even selectively, depending on reader interest. That said, the remaining sections focus in turn on: