Using the Computer-based Health Evaluation System (CHES) to Support Self-management of Symptoms and Functional Health: Evaluation of Hematological Patient Use of a Web-Based Patient Portal

Abstract

Background: Patient portals offer the possibility to assess patient-reported outcome measures (PROMs) remotely, and first evidence has demonstrated their potential benefits.

Objective: In this study, we evaluated patient use of a web-based patient portal that provides patient information and allows online completion of PROMs. A particular focus was on patient motivation for (not) using the portal. The portal was developed to supplement routine monitoring at the Department of Internal Medicine V in Innsbruck.

Methods: We included patients with multiple myeloma and chronic lymphocytic leukemia who were already participating in routine monitoring at the hospital for use of the patient portal. Patients were introduced to the portal and asked to complete questionnaires prior to their next hospital visits. We used system access logs and 3 consecutive semistructured interviews to analyze patient use and evaluation of the portal.

Results: Between July 2017 and August 2020, we approached 122 patients for participation in the study, of whom 83.6% (102/122) consented to use the patient portal. Patients were on average 60 (SD 10.4) years old. Of patients providing data at all study time points, 37% (26/71) consistently used the portal prior to their hospital visits. The main reason for not completing PROMs was forgetting to do so in between visits (25/84, 29%). During an average session, patients viewed 5.3 different pages and spent 9.4 minutes logged on to the portal. Feedback from interviews was largely positive with no patients reporting difficulties navigating the survey and 50% of patients valuing the self-management tools provided in the portal. Regarding the portal content, patients were interested in reviewing their own results and reported high satisfaction with the dynamic self-management advice, also reflected in the high number of clicks on those pages.

Conclusions: Patient portals can contribute to patient empowerment by offering sought-after information and self-management advice. In our study, the majority of our patients were open to using the portal. The low number of technical complaints and average time spent in the portal demonstrate the feasibility of our patient portal. While initial interest was high, long-term use was considerably lower and identified as the main area for improvement. In a next step, we will improve several aspects of the patient portal (eg, including a reminder to visit the portal before the next appointment and closer PROM symptom monitoring via an onconurse).

Keywords: chronic lymphocytic leukemia; eHealth; mHealth; monitoring; multiple myeloma; patient portals; patient-reported outcome measures; quality of life.

Figure 1

Computer-Based Health Evaluation System patient portal functions when patients are at home and in the hospital. *Thresholds for clinical importance [21] are used to highlight domains that require discussion with the health care provider. PRO: patient-reported outcome; HCP: healthcare professional.

Figure 2

Patient interview procedure and topics.

Figure 3

Recruitment flowchart (study patient denotes patients who were also participating in other clinical studies and were not included in our study so as not to overburden the patient with clinical questionnaires).

Figure 4

Page views in the patient portal by category (excluding home page). Categories marked with an asterisk combine multiple pages and subpages. QOL: quality of life; MM: multiple myeloma; CLL: chronic lymphocytic leukemia; Q&A: questions and answers.