title: Comparison of common data elements from the Managing Epilepsy Well (MEW) Network integrated database and a well-characterized sample with nonepileptic seizures.
abstract: BACKGROUND
  Epilepsy and psychogenic nonepileptic seizures (PNES) are both chronic illnesses characterized by similar and overlapping clinical features. A limited number of studies comparing people with epilepsy (PWE) and patients with PNES that address determinants of health outcomes exist. We conducted an analysis using a well-characterized sample of people with PNES and the Managing Epilepsy Well (MEW) Network integrated data, comparing descriptive data on samples with epilepsy and with documented PNES. Based on the pooled data, we hypothesized that people with PNES would have worse QOL and higher depression severity than PWE.
  
  
  METHODS
  We used data from the MEW Network integrated database involving select epilepsy self-management studies comprising 182 PWE and 305 individuals with documented PNES from the Rhode Island Hospital Neuropsychiatry and Behavioral Neurology Clinic. We conducted a matched, case-control study assessing descriptive comparisons on 16 common data elements that included gender, age, ethnicity, race, education, employment, income, household composition, relationship status, age at seizure onset, frequency of seizures, seizure type, health status, healthy days, quality of life, and depression. Standardized rating scales for depression and quality of life were used.
  
  
  RESULTS
  Median seizure frequency in the last 30days for PWE was 1, compared to 15 for patients with PNES (p<0.05). People with epilepsy had a QOLIE-10 mean score of 3.00 (SD: 0.91) compared to 3.54 (0.88) (p<0.01) for patients with PNES. Depression severity was moderate to severe in 7.7% of PWE compared to 34.1% (p<0.05) of patients with PNES.
  
  
  CONCLUSIONS
  People with epilepsy in selected MEW Network programs are fairly well educated, mostly women, with few minorities and low monthly seizure rates. Those with PNES, however, have higher levels of not working/on disability and had more frequent seizures, higher depression severity, and worse QOL. These differences were present despite demographics that are largely similar in both groups, illustrating that other determinants of illness may influence PNES.
authors.affiliation: Rhode Island Hospital, Brown University, USA. Electronic address: william_lafrance_jr@brown.edu.
authors.forename: W Curt
authors.initials: WC
authors.lastname: LaFrance
authors.affiliation: San Paolo Hospital, Dipartimento di Scienze Della Salute Mentale, Psychiatry Branch Universita' degli Studi di Milano, Italy.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Ranieri
authors.affiliation: Rollins School of Public Health, Emory University, USA.
authors.forename: Yvan
authors.initials: Y
authors.lastname: Bamps
authors.affiliation: University of Michigan, USA.
authors.forename: Shelley
authors.initials: S
authors.lastname: Stoll
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Satya S
authors.initials: SS
authors.lastname: Sahoo
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Elisabeth
authors.initials: E
authors.lastname: Welter
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Johnny
authors.initials: J
authors.lastname: Sams
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Curtis
authors.initials: C
authors.lastname: Tatsuoka
authors.affiliation: Case Western Reserve University, USA.
authors.forename: Martha
authors.initials: M
authors.lastname: Sajatovic
mesh_terms: D000328:Adult; D016022:Case-Control Studies; D065709:Common Data Elements; D016208:Databases, Factual; D003866:Depressive Disorder / Q000175:diagnosis* / Q000523:psychology; D004827:Epilepsy / Q000175:diagnosis* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D011602:Psychophysiologic Disorders / Q000175:diagnosis* / Q000523:psychology; D011788:Quality of Life / Q000523:psychology*; D012640:Seizures / Q000175:diagnosis* / Q000523:psychology; D012720:Severity of Illness Index; D055815:Young Adult
keywords: Comorbidity; Demographics; Depression; Epilepsy; Psychogenic nonepileptic seizures; Quality of life