Real-World Experience with an Electronic Patient-Reported Outcome Measure (ePROM) in Care of Patients with Non-Dialysis-Dependent Chronic Kidney Disease

Background: International kidney guideline bodies and people with chronic kidney disease (CKD) have identified a need to incorporate assessments of patient-reported outcomes, which include symptoms and quality of life (QOL), into CKD care. We aimed to identify factors influencing the utilization of an electronic patient-reported outcome measure (ePROM) based on the Kidney Disease Quality of Life-36 (KDQOL-36) instrument, which was integrated with the electronic health record (EHR) and distributed to patients with non-dialysis-dependent CKD (NDD-CKD) prior to each visit to nephrology clinics associated with an academic practice. Methods: We used EHR data and questionnaires of patients and nephrology clinicians to quantify ePROM use and to identify potential facilitators and barriers to utilization. Results: Over 18 months, 2458 individual patients with NDD-CKD received the ePROM, of whom 1017 (41%) completed it at least once. ePROM response was less likely for patients who were older, of Black race, of Hispanic ethnicity, or were living in communities with greater socioeconomic disadvantage as assessed by area deprivation index. Based on questionnaires from 101 patients and 17 clinicians, most participants acknowledged the importance of symptom and QOL assessment in caring for people with CKD. However, ePROM utilization was limited by barriers related to methods of completion, perceived disease-specificity and relevance to people with NDD-CKD, and uncertain impact on care and patient-clinician communication. Fewer than 30% of clinician questionnaire respondents (N=5) reported using the ePROM during clinic encounters. Participants identified opportunities to support ePROM use, including integration of the ePROM with clinic workflow, revisions to ePROM formatting and display, and support for clinicians to manage symptoms. Conclusions: While it was feasible to distribute an ePROM to CKD patients, efforts are needed to ensure that ePROMs meet the needs and preferences of users, which can help support structured ePROM implementation.