Background: Colorectal cancer is the second leading cause of cancer deaths in the United States each year. Screening is effective in reducing colorectal cancer mortality; however, compliance with screening is poor, and factors associated with its compliance are poorly understood. The outcomes of treatment of colorectal cancer (surgery, radiation therapy, and chemotherapy) may have profound effects on quality of life (QOL). Furthermore, colorectal cancer screening and treatment may be expensive, and the costs are important from a policy perspective. This review examines patient-centered outcomes research related to colorectal cancer screening and treatment and outlines the work that has been done in several areas, including patient preferences, QOL, and economic analysis.

Methods: The literature on the health outcomes associated with colorectal cancer screening and treatment was reviewed. A MEDLINE search of English language articles published from January 1, 1990 through February 2001, was conducted and was supplemented by a review of references of obtained articles. Criteria for study inclusion were identified a priori. A standardized data abstraction form was developed. Summary statistical analyses were performed on the results.

Results: Six hundred eighty-six articles were selected for review. In total, 530 articles were excluded because they either did not include patient-centered outcomes, were duplicate articles, or could not be obtained. There were 156 articles included in the analysis; 67 addressed screening, 18 examined surveillance of high-risk groups, 22 concerned treatment of local disease, 10 examined treatment of local and metastatic disease, and 19 considered treatment of metastatic disease only. One study examined end-of-life care. In 19 studies, the phase of care was unspecified.

Conclusions: Standardized, disease-specific QOL instruments should be applied in clinical trials so that the results may be compared across different types of interventions. Valid and reliable methods that accurately capture patient preferences regarding screening and treatment should be developed.