A health services research agenda for cellular, molecular and genomic technologies in cancer care.

BACKGROUND: In recent decades, extensive resources have been invested to develop cellular, molecular and genomic technologies with clinical applications that span the continuum of cancer care. METHODS: In December 2006, the National Cancer Institute sponsored the first workshop to uniquely examine the state of health services research on cancer-related cellular, molecular and genomic technologies and identify challenges and priorities for expanding the evidence base on their effectiveness in routine care. RESULTS: This article summarizes the workshop outcomes, which included development of a comprehensive research agenda that incorporates health and safety endpoints, utilization patterns, patient and provider preferences, quality of care and access, disparities, economics and decision modeling, trends in cancer outcomes, and health-related quality of life among target populations. CONCLUSIONS: Ultimately, the successful adoption of useful technologies will depend on understanding and influencing the patient, provider, health care system and societal factors that contribute to their uptake and effectiveness in 'real-world' settings.

American Society of Clinical Oncology/National Comprehensive Cancer Network Quality Measures.

PURPOSE: The National Cancer Policy Board recommended the creation of quality measures and a national reporting system in 1999. Representatives from the American Society of Clinical Oncology (ASCO) and the National Comprehensive Cancer Network (NCCN) collaborated to create metrics suitable for national performance measurement. METHODS: Content and methodology experts nominated by ASCO and NCCN met to select and refine metrics for breast, colon, and rectal cancer based on National Initiative for Cancer Care Quality and NCCN measures and NCCN and ASCO guidelines. Measures were selected based on their impact on disease free and overall survival, the degree to which opportunities for improvement exist, and the feasibility of data collection. RESULTS: Three breast cancer measures and four colorectal cancer measures were chosen. Measures for breast cancer included adjuvant hormone therapy for hormone receptor-positive tumors, chemotherapy for hormone receptor-negative cancer, and radiation after lumpectomy. Colorectal measures included adjuvant radiation and chemotherapy for rectal cancer, and adjuvant chemotherapy for colon cancer. All but one were recommended as accountability measures and one for quality improvement (removal and examination of 12 or more lymph nodes in colon cancer). Specifications were developed for each measure using tumor registries as the data source. CONCLUSION: ASCO/NCCN measures can be implemented by health systems, provider groups or payors for improvement or accountability using local tumor registries to furnish data on staging and treatment.

Use of patient-reported outcomes in clinical oncology practice: a nonvisit approach to patient care based on the IOM report.

The Institute of Medicine report, Crossing the Quality Chasm, suggested some new ways of thinking about organizing care. This article describes how practices might create continuous healing relationships using methods that are independent of patient visits to monitor and address problems that may occur during cancer care. Such a system would be based on patient report, timely and useful, sensitive to change, and low burden for patients, clinicians, and administrative staff. Furthermore, it would be built into the delivery of care and be integrated with other data systems such as patient records, decision support, and community or other resources. Using reports for patients that are presented in a format that is easily understandable, patients should be able to monitor their own progress.

Taking stock of health-related quality-of-life measurement in oncology practice in the United States.

This article focuses on the routine use of patient-reported outcomes measures in oncology clinical practice to monitor patient progress and inform decision making; and in particular, on measuring patient-reported health-related quality of life (HRQOL). The article summarizes the current literature on the acceptability to patients and clinicians of HRQOL measurement and on the effectiveness of feedback to clinicians about their patients' concerns and quality of life. It also describes the experiences recounted by clinicians and researchers who have been implementing such efforts and concludes that in the United States, little HRQOL measurement occurs in oncology practice. That is, much methodological development has occurred, but many challenges to its widespread adoption exist. These challenges include limitations in knowledge about how to apply outcomes instruments, and clinician, patient-related, and health system issues. That effort deserves significant attention now. The way forward, however, does not lie simply in adding HRQOL measurement to other tasks that are part of everyday practice. Rather, attention to principles of effective dissemination and new information infrastructures and technologies, combined with redesign of care, should embed the routine use of patient-reported outcomes in the care process to provide timely response to patients' needs for information and services.

Outcomes research at the National Cancer Institute: measuring, understanding, and improving the outcomes of cancer care.

What is the National Cancer Institute (NCI) doing to enhance the state of the science for measuring and understanding patient-centered outcomes of cancer care and to make this information useful for improved decision making? The NCI has a new focus on research that describes, interprets, and predicts the impact of various influences, especially interventions, on end points that matter to decision makers. The research includes end points such as survival, health-related quality of life, satisfaction and patient experience, and economic burden. To further this work, NCI supports and conducts research to (1) identify valid, reliable, responsive, and feasible end-point measures; (2) collect high-quality evidence about the impact of interventions on the end points of interest; (3) improve our understanding of the effects of other factors that shape this interaction; and (4) expand our capacity to translate research findings into information that is useful to patients, clinical policy makers, payers, regulators, standard setters, and providers of cancer care.