How was the APECC study conducted?

This population-based SEER study was conducted in collaboration with researchers at the Northern California Cancer Center. The Greater Bay Area Cancer Registry provided the sampling frame. Data were collected between April 2003 and November 2004 through a cross-sectional survey mailed to a representative sample of leukemia, colorectal, and bladder cancer survivors who were diagnosed 2-5 years before the study (diagnosis dates ranged from June 1, 1999 to May 31st, 2001).

Of the 1,572 survivors eligible to participate in the study, 772 (49.2%) returned the survey. A majority of the respondents were colorectal cancer survivors (63.8%), almost a fourth were bladder cancer survivors (24.0%), and the remaining were leukemia survivors (12.1%).

Measures of patients' experience of care were either adapted from existing patient surveys that have been successfully validated in the general population (but not in cancer) such as the Consumer Assessment of Healthcare Providers and Systems (CAHPS) family of survey instruments or were newly created by the APECC research team. All survey items went through one round of cognitive testing to ensure that they were clearly understood and reliably interpreted by potential respondents.

To get an in-depth understanding of how cancer patients and survivors participate in the decision-making process related to their initial treatment as well as their follow-up care, we also conducted detailed focus groups with a small sub-sample of the APECC study participants.