Everyday physical activity, exercise and perceived fitness in patients with difficult-to-treat epilepsy and/or functional/dissociative seizures: development of instruments and single-center experience

OBJECTIVE: To develop questionnaires assessing physical activity (PA) across life domains, exercise and perceived fitness that are suitable for patients with difficult-to-treat epilepsy and/or functional/dissociative seizures (FDS), explore their psychometric properties, and examine the extent of PA, exercise and perceived fitness. METHODS: We developed a questionnaire on seizures and physical activity (QESA) based on the International Physical Activity Questionnaire, and two short instruments for exercise and perceived fitness. We analyzed data from the baseline assessment of a prospective study on an exercise and PA program for patients with epilepsy (PWE) and/or FDS. Retest reliability and construct validity were examined, while the extent of PA and perceived fitness were analyzed mainly descriptively. RESULTS: We included 240 inpatients (146 with epilepsy without FDS, 94 with FDS ± epilepsy) who were mostly not seizure-free (86.6%) and often had psychiatric comorbidities (65.4%). Retest reliabilities for the QESA total score, exercise and perceived fitness were fair to good (intraclass correlation coefficient: 0.54-0.75) and correlation analyses provided preliminary evidence supporting construct validity. PA was low, especially at work (60.0% without PA) and during leisure-time (41.3% without PA). PWE reported less exercise than those with FDS (no exercise: 57.2% vs. 42.6%, p = 0.038). CONCLUSION: The QESA may provide a practical approach to assess PA across life domains in patients with difficult-to-treat epilepsy and/or FDS and the perceived fitness scale is a useful supplement. The level of PA in patients with difficult-to-treat epilepsy and/or FDS is low. This highlights the need for interventions to increase PA in these patient groups.