JMIR Publications

ABSTRACT

Background:

As a result of improvements in cancer screening, treatment, and supportive care; nearly two-thirds of individuals diagnosed with colorectal cancer (CRC) are living 5 years after diagnosis. An ever-increasing population of CRC survivors creates a need for effective survivorship care to help manage and mitigate the impact of CRC and its treatment. Personal health records (PHRs) and survivorship care plans (SCPs) provide a means of supporting the long-term care of cancer survivors. Currently, no literature exists on the use of these technologies specifically targeting colorectal cancer (CRC) survivors.

Objective:

The purpose of this study is to: 1) characterize the usefulness of a CRC PHR and survivorship care plan (SCP), and 2) describe the usability of these technologies among a population of CRC survivors. To our knowledge, this is the first study to assess a PHR and SCP specifically targeting CRC survivors.

Methods:

Twenty-two CRC cancer patients were recruited from surgery clinics of an academic medical center and VA hospital in Indianapolis and provided access to an online Colorectal Cancer Survivor’s Personal Health Record (CRCS-PHR). A mixed methods approach was taken to characterize the usefulness of a CRC-PHR and SCP and describe its usability among a population of CRC survivors. CRC patients were surveyed 6 months after being provided online access. Means and proportions were used to describe the usefulness and ease of using the CRC website. Open-ended questions were qualitatively coded using the constant comparative method.

Results:

Survivors perceived features related to their healthcare (i.e., Summary of My Cancer Treatment History, Reviewing my Follow-up Care Schedule, Self-entering Follow-up Tests I had Received, Description of Side Effects, and List of Community Resources) to be more useful than communication features (i.e., Creating and Setting up Relationships with Family Members or Caregivers, Communicating with my Doctor, Sending Mail Messages through the Cancer Website) as CRC survivors typically described utilizing traditional channels to communicate with their healthcare provider, i.e., via telephone or in-person. Participants had overall positive perceptions when it comes to ease of use and overall satisfaction. Major challenges experienced by participants included barriers logging into the system, inexperience and lack of computer literacy, as well as difficulty entering their patient information.

Conclusions:

These findings regarding the usability of a PHR for the management of CRC survivorship provides valuable insight on tailoring these technologies to patients’ experiences. These findings will inform future development of PHRs for purposes of both cancer and chronic disease management.