PARADISE 24 instrument: An observational study on psychosocial difficulties, quality of life, and disability levels in patients with epilepsy

•The main psychosocial difficulties (PSDs) of persons with epilepsy (PwE's) are tiredness, anxiety, depressive mood, emotional, and driving problems.•PwE had a moderate severity rating according to clinicians' rating scale.•PwE report low impact of comorbidities, high QoL levels, and low disability levels.•PwE presented medium scores in the PARADISE 24 instrument.•PARADISE 24 allows data collection on patient's functioning and their PSDs.

AimThe aim of this observational study was to test the effectiveness of the PARADISE 24 instrument in describing the psychosocial difficulties (PSDs) reported by people with epilepsy, their relation with disability, and quality-of-life (QoL) levels and, overall, to explore a horizontal epidemiology methodology applied to a sample of patients with epilepsy.MethodsA convenience sample of 80 adult patients with epilepsy was included in this cross-sectional study. Patients were interviewed using a structured protocol composed of demographic, clinical, and patient-reported outcome measures to collect PSDs associated with epilepsy.ResultsThere were 80 patients, 40 females; mean age was 41.2 years; mean disease duration was 18.7 years; and mean number of AED was 2.09. Moderate severity rating according to clinicians' rating scale, low impact of comorbidities (mean: 2.36, SD: 2.97), high levels of QoL (mean: 30.00, SD: 4.4), medium levels of resilience (mean: 13.56, SD: 2.66), high levels of perceived empathy (mean: 15.05, SD: 4.74), poor or moderate perceived social support, and low levels of disability (mean: 10.85, SD: 10.05) were observed. The most frequently reported PSDs were related to tiredness (80%), emotional problems (73.75%), anxiety (68.75%), depressive mood (66.25%), and driving problems (61.25%). The EUROHIS-QOL (p = .003) had a negative significant relationship with PARADISE 24 while WHODAS-12 (p = .000) and CRS (p = .027) had a positive significant relationship with PARADISE 24.ConclusionsThe PARADISE 24 permits data comparison and the creation of a complete description of a person's functioning and of all of his/her PSDs and allows better and more tailored interventions.