Abstract

Digital supportive cancer care is recommended to improve patient outcomes. A portal was designed and embedded within the electronic medical record and public health portal of Iceland, consisting of symptom and needs monitoring, educational material, and messaging. This study aims to assess (1) portal feasibility (adoption, engagement, usability, and acceptability), (2) potential predictors of usability and acceptability, and (3) the potential impact of the portal on patient-reported outcomes. This was a single-arm, before-and-after feasibility study at a university hospital among patients with cancer who were undergoing chemotherapy. Participation included filling out the Edmonton Symptom Assessment System-Revised (ESASr) weekly and the Distress Thermometer and Problem List (DT&PL) 3 times; reading educational material and messaging; and completing study questionnaires. Clinical and portal engagement data were collected from medical records. Data from patients were collected electronically at baseline and 7 to 10 days after the third chemotherapy round. Usability was assessed using the System Usability Scale (score 0-100), and acceptability was assessed using a 35-item survey (score 1-5). Patient-reported outcome measures included ESASr and DT&PL; a single-item scale for quality of life, family support, and quality of care; and multi-item scales for health literacy (Brief Health Literacy Screener), health engagement (Patient Health Engagement Scale), self-care self-efficacy (Self-Care Self-Efficacy scale), symptom interference (MD Anderson Symptom Inventory), knowledge expectations (Hospital Patients' Knowledge Expectations), and received knowledge (Hospital Patients' Received Knowledge). Health care professionals were interviewed regarding portal feasibility. The portal adoption rate was 72% (103/143), and the portal use rate was 76.7% (79/103) over a mean 8.6 (SD 2.7) weeks. The study completion rate was 67% (69/103). The combined completion rate of the ESASr and DT&PL was 78.4% (685/874). Patients received a mean 41 (SD 13) information leaflets; 33% (26/79) initiated messaging, 73% (58/79) received messages, and 85% (67/79) received follow-up phone calls. The mean System Usability Scale score was 72.3 (SD 14.7), indicating good usability. Usability was predicted by age (β=-.45), ESASr engagement (β=.5), symptom interference (β=.4), and received knowledge (β=.41). The mean acceptability score, 3.97 (SD 0.5), was above average and predicted by age (β=-.31), ESASr engagement (β=.37), symptom interference (β=.60), self-care self-efficacy (β=.37), and received knowledge (β=.41). ESASr scores improved for total symptom distress (P=.003; Cohen d=0.36), physical symptoms (P=.01; Cohen d=0.31), and emotional symptoms (P=.01; Cohen d=0.31). Daily symptom interference increased (P=.03; Cohen d=0.28), quality of life improved (P=.03; Cohen d=0.27) and health engagement (P=.006; Cohen d=0.35) improved, while knowledge expectations decreased (P≤.001; Cohen d=2.57). Health care professionals were positive toward the portal but called for clearer role delineation and follow-up. This study supports the feasibility of a support portal and the results indicate the possibility of improving patient outcomes, but further developments are warranted.

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