JMIR Publications

ABSTRACT

Background:

A cancer patient portal was designed into the national electronic medical record (EMR) and the public health portal system in Iceland. It consists of remote symptom monitoring with an alert system, delivery of educational material and messaging. At the outset of implementation, a feasibility study was conducted with patients and staff from two treatment teams at Landspitali Cancer Clinic.

Objective:

The study aimed to assess (1) the portal feasibility by adoption, engagement rates, usability, and acceptability, and (2) the preliminary impact and effect sizes of the patient reported portal and secondary outcomes.

Methods:

A continuous sample of patients with at least three chemotherapy administrations planned were invited to use the port and participate in a single arm before and after study. Data on portal engagement, and from the first and final assessments of the ESASr (Edmonton Symptom Assessment Survey revised) and DT&PL (Distress Thermometer & Problem list) the portal PRO´s (Patient Reported Outcomes), were retrieved from medical records. Usability was assessed with the System Usability Scale (SUS) and acceptability with a 35-item agreement scale. Secondary scale measures included perceived quality of life, family support and quality of care, health literacy, health engagement, self-care self-efficacy (SCSE), symptom interference, expected and received knowledge. Healthcare providers (HCP) participated in interviews about the portal feasibility. Data were analyzed with descriptive and inferential statistics.

Results:

Patient portal adoption rate was 72% (103/143) and engagement was 77% (79/103). Mean study time was 8.6 (SD 2.7) weeks. ESASr completion rate was 78% (685/874) and DT&PL 99% (241/242). Patients received a mean of 41(SD 13) information leaflets, 33% initiated messaging, 73% received messages and 85% got phone calls from HCP. The mean usability score was 72.3 (95% CI 68.7-75.3) and was significantly explained by age (β= -0.45), symptom interference (β=0.4), received knowledge (β =0.25), and ESASr engagement (β=0.5). The mean acceptability score was 3.97 (95% CI 3.9- 4.1) and was significantly explained by age (β=-0.31), ESASr engagement (β=0.37), SCSE (β= 0.37), daily symptom interference (β= 0.60) and received knowledge (β=0.41). The ESASr scores improved significantly for total symptom distress (d=0.36), physical (d=0.31) and emotional (d=0.31) intensity, but daily symptom interference increased (d=0.28). Quality of life (d=0.27) and health engagement (d=0.35) improved, and knowledge expectations decreased (d=2.57) significantly. HCP were positive towards the portal and its usability but reported the need for a more detailed role delineation and follow-up.

Conclusions:

This short-term study supports the feasibility of the portal linked to the national EMR and public health port. The results indicate a possibility of improving patient outcomes. Improvements are needed to further the portal’s implementation and impact over a longer period.