title: PARADISE 24 instrument: An observational study on psychosocial difficulties, quality of life, and disability levels in patients with epilepsy.
abstract: The 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.
  
  
  
  A 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.
  
  
  
  There were 80 patients, 40 females; mean age was 41.2years; mean disease duration was 18.7years; 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.
  
  
  
  The 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.
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy; Division of Clinical Epileptology and Experimental Neurophysiology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy. Electronic address: Rui.Quintas@istituto-besta.it.
authors.forename: Rui
authors.initials: R
authors.lastname: Quintas
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy; Neurosurgery Department, Radiotherapy Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Milda
authors.initials: M
authors.lastname: Cerniauskaite
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy; Department of Neuroimmunology and Neuromuscular Diseases, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Ambra Mara
authors.initials: AM
authors.lastname: Giovannetti
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Silvia
authors.initials: S
authors.lastname: Schiavolin
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Alberto
authors.initials: A
authors.lastname: Raggi
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy; e-Campus University, Novedrate, Como, Italy.
authors.forename: Venusia
authors.initials: V
authors.lastname: Covelli
authors.affiliation: Division of Clinical Epileptology and Experimental Neurophysiology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Flavio
authors.initials: F
authors.lastname: Villani
authors.affiliation: Division of Clinical Epileptology and Experimental Neurophysiology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Giuseppe
authors.initials: G
authors.lastname: Didato
authors.affiliation: Division of Clinical Epileptology and Experimental Neurophysiology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Deleo
authors.affiliation: Division of Neurophysiology and Diagnostic Epileptology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Silvana
authors.initials: S
authors.lastname: Franceschetti
authors.affiliation: Division of Neurophysiology and Diagnostic Epileptology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Simona
authors.initials: S
authors.lastname: Binelli
authors.affiliation: Division of Neurophysiology and Diagnostic Epileptology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Laura
authors.initials: L
authors.lastname: Canafoglia
authors.affiliation: Division of Neurophysiology and Diagnostic Epileptology, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Marina
authors.initials: M
authors.lastname: Casazza
authors.affiliation: Neurology, Public Health, Disability Unit, Neurological Institute C. Besta IRCCS Foundation, Milan, Italy.
authors.forename: Matilde
authors.initials: M
authors.lastname: Leonardi
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D006233:Persons with Disabilities / Q000523:psychology*; D004827:Epilepsy / Q000453:epidemiology / Q000523:psychology*; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D008297:Male; D008875:Middle Aged; D011594:Psychometrics / Q000295:instrumentation*; D011788:Quality of Life / Q000523:psychology; D012720:Severity of Illness Index
keywords: Disability; Epilepsy; Horizontal epidemiology; Psychosocial difficulty; Quality of life