Patient Perspective in the Development of Electronic Patient-Reported Outcomes (ePROs) in Seizure Disorders: A Patient-Centric Approach

Anzalee Khan,1,2 Alyssa Peechatka,3 Nadeeka R Dias,3 Viviane Lima,3 Mary Seddo,2 Ayla Inja,2 Susan M Dallabrida4 1Nathan S. Kline Institute for Psychiatric Research, Orangeburg, NY, USA; 2Manhattan Psychiatric Center, New York, NY, USA; 3eResearch Technology Inc., Boston, MA, USA; 4Oracle, Burlington, MA, USACorrespondence: Anzalee KhanNathan S. Kline Institute for Psychiatric Research, c/o Manhattan Psychiatric Center, 1 Wards Island Complex, Wards Island, NY 10035, USATel +1 646 672 6005Fax +1 646 672 6276Email anzalee.khan@nki.rfmh.orgBackground: Patient-centered outcomes research (PCOR) emphasizes the patient perspective and input to inform the research process with the aim to improve the quality of care. Given PCOR’s emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are important. Electronic PROs (ePROs) have been implemented successfully in many populations; however, many of these measurements do not incorporate patient perspective in the development of ePROs. For epilepsy and seizure disorders, user perspectives are key to developing measurements that capture real-time data, as seizures are not timed events; therefore, patients can wait days or even weeks and then try to recall their experience which can lead to variations in recall. ePRO can provide the necessary assurance that data were entered by the patient at the time the episode occurs. The aim of the present study was to assess patient perceptions of completing ePROs, expectations of ePRO devices for PCOR and on-site clinical visit in order to guide the development of successful ePRO deployment in seizure-related disorders.Methods: This study used a naturalistic cohort design. A sample of 713 persons completed an online survey which consisted of 11 situational questions. Of the 713 individuals, results from 640 participants were included. Results were compared using a Wilcoxon signed-rank test.Results: Most participants (71.9%) were able to accuratel