title: Patient and caregiver quality of life in psychogenic non-epileptic seizures compared to epileptic seizures.
abstract: OBJECTIVE
  Little is known about the effect of psychogenic non epileptic seizures (PNES) to caregiver quality of life (QOL), particularly as it compares to epileptic seizures (ES). We sought to characterize this effect and identify its determinants.
  
  
  METHODS
  The study population comprised of 126 ES and 33 PNES patients who underwent video EEG monitoring along with 48 and 18 caregivers respectively who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, cognitive, psychiatric, sleep and QOL information on admission, prior to their diagnosis being clarified. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Paraclinical data were also gathered. Regression analysis was used to identify patient and caregiver related determinants of patient and caregiver QOL.
  
  
  RESULTS
  QOL scores were significantly worse for PNES than ES patients and were mainly linked to depression levels. PNES and ES caregivers had comparable demographic characteristics and QOL scores. ES caregiver QOL was better in employed caregivers with lower burden scores for the physical component summary (PCS) and worse in female caregivers of depressed patients with higher burden scores for the mental component summary (MCS). Caregiver burden score was the strongest correlate of PNES caregiver MCS QOL score.
  
  
  CONCLUSIONS
  Caregiver QOL in PNES does not differ from caregiver QOL in ES, while patient QOL is worse in PNES. Caregiver burden emerges as a consistent correlate of caregiver QOL both in ES and PNES. These findings advocate for consideration of caregiver burden and QOL in PNES in clinical practice and for future research paradigms.
authors.affiliation: Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA. Electronic address: ioannis.karakis@emory.edu.
authors.forename: Ioannis
authors.initials: I
authors.lastname: Karakis
authors.affiliation: Department of Neurology, Boston Medical Center, Boston University School of Medicine, Boston, MA, USA.
authors.forename: Georgia D
authors.initials: GD
authors.lastname: Montouris
authors.affiliation: Department of Neurology, Democritus University of Thrace, Alexandroupolis, Greece.
authors.forename: Charitomeni
authors.initials: C
authors.lastname: Piperidou
authors.affiliation: Department of Neurology, University California San Francisco, San Francisco, CA, USA.
authors.forename: Marta San
authors.initials: MS
authors.lastname: Luciano
authors.affiliation: Department of Neurology, Emory University School of Medicine, Atlanta, GA, USA.
authors.forename: Kimford J
authors.initials: KJ
authors.lastname: Meador
authors.affiliation: MGH Epilepsy Service, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA.
authors.forename: Andrew J
authors.initials: AJ
authors.lastname: Cole
mesh_terms: D000328:Adult; D017028:Caregivers / Q000523:psychology*; D004569:Electroencephalography / Q000379:methods; D004827:Epilepsy / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D017060:Patient Satisfaction; D011788:Quality of Life / Q000523:psychology*; D012640:Seizures / Q000175:diagnosis / Q000523:psychology* / Q000628:therapy; D011795:Surveys and Questionnaires
keywords: Burden; Caregiver; Epilepsy; Psychogenic non epileptic seizures; Quality of life; SF36v2; Zarit burden interview