JMIR Publications

ABSTRACT

Background:

There are currently an estimated 1.5 million individuals living in the United States (US) with colorectal cancer (CRC), and although the five-year survival rate has increased, survivors are at risk for recurrence, particularly within the first 2-3 post-treatment. National guidelines recommend continued surveillance post-resection, in order to identify recurrence early on. Adherence among survivors ranges from 49%-94%. Novel interventions are needed to increase CRC survivors’ knowledge and confidence in managing their cancer and thus increase adherence to follow-up surveillance.

Objective:

The objective of this study was to develop and test the feasibility and efficacy of a web-based personal health record (PHR) to increase surveillance adherence among CRC survivors, with patient beliefs about surveillance as secondary outcomes.

Methods:

A pre- and post-intervention feasibility trial was conducted testing the efficacy of the Colorectal Cancer Survivor (CRCS)-PHR, which had been previously developed using an iterative, user-centered design approach. The CRCS-PHR includes surveillance guidelines, treatment tracking, potential treatment toxicities, as well as a journaling tab and communities to interact with other CRC survivors. A total of 28 stage I-III CRC survivors (9 colon, 18 rectal, 1 unknown) were recruited from an academic medical center in the Midwest US. At enrollment, patient demographics and cancer characteristics were gathered via medical record audit. Following enrollment, patients completed surveys at baseline and 6 months post-intervention asking about adherence to colonoscopy, computed tomography (CT) scan, and carcinoembryonic antigen (CEA) and beliefs about surveillance (barriers, benefits, self-efficacy, and knowledge). Paired t-test analyses were used to compare pre- and post-intervention ratings for each of the four patient beliefs categories and surveillance adherence.

Results:

The average age of the sample was 58 years old, with 57% males and the majority being married and employed full time. We observed a significant increase in adherence to colonoscopy (pre: 52% vs. post: 86%, p<.01) and CEA (67% vs. 95%, p=.01), as well as a slight increase in CT scans (67% vs. 84%, p=.1). The only significant impact on secondary outcome (patient beliefs) was benefits of CEA test (p=.04), as most of the beliefs were high at baseline.

Conclusions:

This feasibility study lays the groundwork for continued development of the CRCS-PHR to increase CRC surveillance. Patient-centered technologies, such as the CRCS-PHR, represent an important potential approach to improving the receipt of guideline-concordant care and follow-up surveillance, not just for CRC survivors. Researchers should continue to develop patient-centered health technologies with clinician implementation in mind to increase patient self-efficacy and surveillance adherence.