The Outcomes of Cancer Outcomes Research: focusing on the National Cancer Institute's quality-of-care initiative.

Outcomes Research Branch, Applied Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland 20892-7344, USA.
Medical Care (Impact Factor: 3.23). 07/2002; 40(6 Suppl):III3-10.
Source: PubMed


To assess the impact of outcomes research, the Agency for Healthcare Policy and Research has proposed a four-level typology that successively distinguishes between research that (1) adds to the knowledge base only, (2) affects practice policies, (3) influences the delivery of care, and (4) leads to changes in health outcomes. The agency has concluded that outcomes research to date has made substantial contributions at level 1, but has had little impact at levels 2 to 4.
To describe the National Cancer Institute's emerging agenda in cancer outcomes research, focusing on how it has been shaped early on to support the institute's quality of care initiative and noting whether each new project represents outcomes research at level 1, 2, 3, or 4.
Cancer outcomes research describes, interprets, and predicts the impact of various influences, especially (but not exclusively) interventions on endpoints that matter to decision makers. The institute's projects to improve the scientific quality of final endpoint measures, strengthen the methodologic and empirical basis for quality of care analysis, and enhance the application of health-related quality-of-life measures in clinical trials represent level 1 applications of outcomes research. Collaborative projects with federal agencies to translate evidence into practice and a new public and private effort to identify core measures of cancer quality represent level 2 and level 3 outcomes research.
The stage has been set for carrying out a balanced portfolio of level 1 to 3 outcomes research projects in cancer, with the ultimate (level 4) aim of improving cancer-related health outcomes.

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    • "Examples include indicators developed for acute myocardial infarction, and heart failure, etc. (JCAHO 2003). Several studies have explored generic performance measures such as a standardized core measurement set (Eddy 1998), common measures (McGlynn 2003) and evidence-based guideline transferred indicators (Grol 2001), as well as disease-specific measures in cancer care such as core cancer measures (McGlynn & Malin 2002), core process and outcome measures (Lipscomb & Snyder 2002) and core performance measures (CPMs) (Schneider et al. 2004). There are some previous efforts to develop cancer care indicators that cover part of the care continuum (Malin et al. 2000; Spencer et al. 2003) or include a large number of measures with burdensome data collection (Mandelblatt et al. 1999). "
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    ABSTRACT: The purpose of the study was to develop organization-based core performance measures (CPMs) for breast cancer patients treated in hospitals that participated in cancer quality improvement programmes in Taiwan. CPMs were developed in three stages that included a preparation, a consensus building stage, and two stages of stakeholder feedback. Three criteria and seven subcriteria were applied in the development process. Indicators listed in a Delphi questionnaire were based on a literature search, indicators developed by relevant institutions and discussion by authors. Each indicator needed to meet inclusion criteria as a final indicator. Evidence-based guidelines, expert opinions from panel group, 27 hospitals and empirical data were all applied to develop and revise the core measures. Fifteen out of 28 indicators were selected and modified after the three stages. There were two pre-treatment indicators for screening and diagnosis, nine treatment-related indicators, and four monitoring-related indicators. Six indicators were supported by evidence level I, and four indicators by level II evidence. The CPMs for breast cancer can be developed systematically and be applied for internal quality improvement and external surveillance. Our experience can be extended to other cancer sites and adapted to link with pay for performance or certification program in cancer care.
    European Journal of Cancer Care 12/2007; 17(1):5 - 18. DOI:10.1111/j.1365-2354.2007.00796.x · 1.56 Impact Factor
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    • "Cancer communication can be regarded as an attribute of good-quality care [1]. And, a critically-important arena of cancer outcomes research is quality of care, including ways to disseminate the results of relevant outcomes research to users [1]. Increasingly, care is moving from hospitals to ambulatory care settings, to community facilities, and the home [2]. "
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    ABSTRACT: At least some forms of breast cancer are increasingly being viewed as a chronic illness, where an emphasis is placed on meeting the various ongoing needs of people living with cancer, their families and other members of their social support networks. This commentary outlines some approaches to the evaluation of cancer-related support groups, with a particular emphasis on those designed to provide long-distance support, via the internet, for women with breast cancer. The literature on evaluations of community-based cancer support groups indicates that they offer a number of benefits, and that it is more reasonable to expect an impact of such interventions on psychosocial functioning and/or health-related quality of life than on survival. The literature on both face-to-face and online social support groups suggests that they offer many advantages, although evaluation of the latter delivery mechanism presents some ethical issues that need to be addressed. Many popular online support groups are peer-moderated, rather than professionally-moderated. In an evaluation of online support groups, different models of the role of the "navigator" need to be taken into account. Some conceptual models are outlined for the evaluation of the "navigator role" in meeting the informational, decisional and educational needs of women with breast cancer. The Breast-Cancer Mailing List, an example of an unmoderated internet-based peer-support group, is considered within the context of a Shared or Tacit Model of the navigator role. Application of the concept of a "navigator role" to support groups in general, and to unmoderated online ones in particular, has received little or no attention in the research literature. The navigator role should be taken into account in research on this increasingly important aspect of cancer communication.
    Health and Quality of Life Outcomes 02/2003; 1(1):16. DOI:10.1186/1477-7525-1-16 · 2.12 Impact Factor
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    ABSTRACT: The science of oncology care is rapidly developing, resulting in considerable variation in treatment patterns and disparity in the quality of care. Efforts are under way to evaluate and improve the quality of oncology care, because the goals of care have progressed beyond reducing morbidity and mortality to include maximizing functional and cognitive status, improving health-related quality of life, and preserving productivity. Traditional indicators of quality of care were based on survival outcomes or the processes of care. Although these remain important, they are inadequate for evaluating the multidimensional goals of care. Although not commonly included, patient-reported outcomes (PROs) would enhance the evaluation of the quality of care by including a patient perspective. A model for measuring quality of care that incorporates outcomes, structures, and processes of care as well as patient characteristics is proposed. Methodology including PROs that are valid, reliable, sensitive, and feasible, as well as rigorous risk adjustment methods, is critical to quality of care studies that appropriately inform decision makers.
    The American journal of managed care 01/2003; 8(18 Suppl):S580-6. · 2.26 Impact Factor
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