Outcome states of colorectal cancer: identification and description using patient focus groups.

ABSTRACT

OBJECTIVE: Utilities for the outcome states of colorectal cancer must be measured to evaluate the cost-utility of screening and surveillance strategies for this disease. We sought to identify these outcome states, define their associated areas of morbidity, and construct representative descriptions of them for use in a utilities assessment instrument. METHODS: We identified candidate colorectal cancer outcome states based on a review of the literature and interviews with health care professionals. We organized patient focus groups from each of the candidate outcome states to examine their homogeneity and define their associated areas of morbidity. After analyzing the focus group transcripts, we identified and described outcome states of colorectal cancer for future incorporation into a utilities assessment instrument. RESULTS: Six candidate outcome states of colorectal cancer were identified based on disease stage and location at diagnosis. Thirty-eight patients then participated in six focus groups. Analysis of the focus group transcripts revealed seven areas of morbidity associated with colorectal cancer. These areas included problems with social interaction and cognition, fear of cancer recurrence, pain, fatigue, changes in bowel habits, and sexual dysfunction. Based on differences in the intensity and frequency of the symptoms reported in each of these areas, seven distinct outcome states of colorectal cancer were identified and described. CONCLUSION: Clinically distinct outcome states of colorectal cancer are determined by the stage and location of the cancer at the time of diagnosis. Descriptions of these outcome states were created using data collected from patient focus groups. These descriptions can be incorporated into a utilities assessment instrument.