MINDSET 2.0: Badanie możliwości użycia cyfrowego narzędzia wspomagającego samodzielne zarządzanie epilepsją
MINDSET 2.0: feasibility of digital decision support for epilepsy self-management
W skrócie
Naukowcy przetestowali nowe narzędzie internetowe o nazwie MINDSET 2.0, które ma pomóc pacjentom z epilepsją i ich lekarzom w planowaniu leczenia i samoopieki. Program analizuje potrzeby pacjenta i proponuje odpowiednie programy treningowe oraz wskazuje na ważne czynniki zdrowotne poza samą chorobą. Badanie wykazało, że pacjenci i lekarze dobrze ocenili to narzędzie - uznali je za łatwe w użyciu, pomocne i wartościowe dla lepszego zarządzania epilepsją, choć potrzebne są dalsze testy, aby potwierdzić jego rzeczywistą efektywność.
Oryginalny abstract (angielski)
BACKGROUND: The Managing Epilepsy Well Network (MEWN) epilepsy self-management (ESM) training programs assist people with epilepsy (PWE) in improving their ESM and co-morbidities. The online bilingual Management Information & Decision Support Epilepsy Tool (MINDSET) was enhanced to provide recommendations for these programs and to assess non-medical drivers of health (NMDH). PURPOSE: This study aimed to assess the feasibility of MINDSET 2.0, guided by Bowen et al.'s feasibility framework, and its perceived efficacy in providing PWE and healthcare providers with a tailored goal-based action plan, including ESM program recommendations and identified NMDH. METHODS: A single-group feasibility trial was conducted from March to August 2022 with seven adult PWE in Arizona ( = 4) and Texas ( = 3) who completed MINDSET 2.0 before their regular clinic visit, discussed their action plan with their neurologist, and then completed a feasibility rating scale and exit interview. RESULTS: Participants rated MINDSET 2.0 as acceptable, likable, credible, easy to use, appealing (100% agreement), of appropriate duration (83%), easy to understand (67%), impactful for managing epilepsy (75-100%), and found the program helpful (100%). The MINDSET 2.0 recommendation algorithms demonstrated 100% agreement between programmed and generated recommendations, confirming that the software executed the predefined decision rules as intended. Clinical feasibility of MINDSET 2.0 was evaluated separately through usability, acceptability, and implementation-related measures. Three participants needed help using MINDSET 2.0 (50%). Neurologists ( = 3) rated MINDSET 2.0 as increasing the thoroughness of information collected from and improving communication with PWE. CONCLUSION: In addition to generating an ESM action plan, MINDSET 2.0 may be feasible in assisting PWE and neurologists in decision-making regarding the most suitable MEWN ESM training programs and the most pressing NMDH. Given that no participants reported prior experience with MEW programs, these ratings likely reflect participants' familiarity with and initial impressions of the recommended interventions rather than direct evaluations of their value or effectiveness. Further efficacy testing is required.