Uncertainty-aware personalized estimation of Parkinson's disease severity from longitudinal speech.

Epilepsy is a neurological condition, defined by repeated seizures of varied onset and type that affects more than 50 million people globally []. Approximately 2.9 million adults in the United States have active epilepsy [,]. People with epilepsy exhibit seizures that can manifest with temporary loss of awareness or consciousness; disturbed movement; altered vision, hearing, and taste; reduced mental function; anxiety and depression; and lower quality of life [,]. Epilepsy self-management (ESM) is important to enhance the self-efficacy of people with epilepsy in managing seizures and to optimize their quality of life []. ESM comprises a range of behaviors that include (1) medication management (eg, adherence to prescribed medication and clinical visit regimens), (2) seizure management (eg, preparation for, and response to, seizure episodes), (3) lifestyle management (eg, altering behaviors to avoid seizures and/or adverse consequences of seizures), and shared decision-making between the patient and their health care provider (HCP) [,]. ESM is associated with increased management self-efficacy and decision-making by people with epilepsy and their families, fewer breakthrough seizures, lower rates of hospitalization, and decreased risk for injury and premature death []. The COVID-19 pandemic disrupted traditional in-person clinic visits due to social distancing requirements and promoted digital solutions for patient treatment, such as telemedicine []. Digital decision support can assist HCPs to tailor patient care and increase patient awareness, knowledge, skills, and reach []. The Management Information & Decision Support Epilepsy Tool (MINDSET) was developed in 2015 to enhance patients with epilepsy and HCP assessment of ESM and has demonstrated improvement in adherence of patients with epilepsy to ESM [-]. An enhanced cross-platform web-based version of MINDSET, MINDSET 2.0, has been developed to enable improved function, phone-based accessibility, and added assessment and feedback on patient quality of life, cognitive difficulties, and social determinants of health [-]. User experience testing is a necessary antecedent of successful implementation of digital decision support to ensure it meets the specific needs of the priority population prior to deployment in the field []. The purpose of this study was to assess the user experience and functionality of MINDSET 2.0 with a sample of patients with epilepsy prior to deployment for feasibility testing within neurology clinic settings. MINDSET is a theoretically and empirically based digital ESM program, originally accessible on desktop or tablet computers in the clinic [,]. Patients choose their preferred language (English or Spanish) and input data (“My Epilepsy”) about their epilepsy condition (overall subjective health rating, seizure frequency in the last 30 days, seizure symptoms, antiseizure drug [ASD] prescription, and days of missed doses in the last 2 weeks) and their adherence to ESM behaviors within each of the 3 ESM domains (seizure, medication, and lifestyle management) using the Epilepsy Self-management Survey (ESMS) [-]. They complete the Neurological Disorders Depression Inventory in Epilepsy (NDDI-E) to assess depression [] and the Liverpool Adverse Events Scale to assess ASD side effects [-] (). Patients select up to 3 ESM goals (one each for seizure, medication, and lifestyle management) to improve low adherent ESM behaviors (“My Goals”), choose strategies to accomplish these goals, rate their self-efficacy to achieve their selected goals, and list barriers to meet these goals [,]. The goals are designed to increase patient adherence to low adherent behaviors. A tailored goal-based action plan (AP; “My Action Plan”) is dynamically generated and is printed to review and discuss with the HCP during the clinic encounter ( and ). Page 1 of the AP comprises a summary of the patient’s epilepsy history and current condition, assessment of ESM behaviors and depression (). Pages 2 to 4 summarize the selected goal, strategies, self-efficacy, and barriers for seizure, medication, and lifestyle management, respectively.