Patient-reported outcomes via electronic health record portal versus telephone: a pragmatic randomized pilot trial of anxiety or depression symptoms in epilepsy

Lay Summary This study among people with epilepsy and anxiety or depression symptoms was designed to test electronic health record methods to identify and invite research participants, and compare methods for participants to report symptoms and quality of life 3 and 6 months later. Individuals were invited to participate in the research study based on information collected in the health record at a routine epilepsy clinic visit, and half the participants were assigned to outcome questions sent using their health record patient portal, while the other half were assigned to telephone call outcome collection. The main goals of the study were to determine how likely participants were to return their outcome information by the health record portal method, and to see if there were differences in the process of collecting outcomes by health record portal compared to telephone. The results showed individuals in the health record portal group were less likely to return their outcome questionnaires than those in the telephone group. However, the health record portal method saved a lot of research team time collecting the outcome information (at least 4-7 min per participant), even when those who did not return their questionnaires by health record received phone calls later on. Objective To close gaps between research and clinical practice, tools are needed for efficient pragmatic trial recruitment and patient-reported outcome collection. The objective was to assess feasibility and process measures for patient-reported outcome collection in a randomized trial comparing electronic health record (EHR) patient portal questionnaires to telephone interview among adults with epilepsy and anxiety or depression symptoms. Materials and Methods Recruitment for the randomized trial began at an epilepsy clinic visit, with EHR-embedded validated anxiety and depression instruments, followed by automated EHR-based research screening consent and eligibility assessment. Fully eligible individuals later completed telephone consent, enrollment, and randomization. Participants were randomized 1:1 to EHR portal versus telephone outcome assessment, and patient-reported and process outcomes were collected at 3 and 6 months, with primary outcome 6-month retention in EHR arm (feasibility target: >= 11 participants retained). Results Participants (N = 30) were 60% women, 77% White/non-Hispanic, with mean age 42.5 years. Among 15 individuals randomized to EHR portal, 10 (67%, CI 41.7%-84.8%) met the 6-month retention endpoint, versus 100% (CI 79.6%-100%) in the telephone group (P = 0.04). EHR outcome collection at 6 months required 11.8 min less research staff time per participant than telephone (5.9, CI 3.3-7.7 vs 17.7, CI 14.1-20.2). Subsequent telephone contact after unsuccessful EHR attempts enabled near complete data collection and still saved staff time. Discussion In this randomized study, EHR portal outcome assessment did not meet the retention feasibility target, but EHR method saved research staff time compared to telephone. Conclusion While EHR portal outcome assessment was not feasible, hybrid EHR/telephone method was feasible and saved staff time.