title: Developing the Pediatric Refractory Epilepsy Questionnaire: a pilot study.
abstract: OBJECTIVE
  Up to 14% of children with epilepsy continue to experience seizures despite having appropriate medical therapy and develop medically refractory epilepsy (MRE). Assessing clinical outcomes and therapeutic efficacy in children with MRE undergoing palliative epilepsy surgery has been challenging because of the lack of a quantitative instrument capable of estimating the clinical status of these patients. The ideal instrument would at once consider seizure control, neurodevelopment, caregiver burden, and quality of life. The purpose of this study was to develop and pilot the Pediatric Refractory Epilepsy Questionnaire (PREQ), a quantitative instrument to assess the severity and individual burden of epilepsy in children with MRE undergoing palliative epilepsy treatments.
  
  
  METHODS
  The caregivers of 25 patients with MRE completed the PREQ and the Quality of Life in Childhood Epilepsy (QOLCE) measure and participated in a semistructured interview. Medical records of the patients were reviewed, an Early Childhood Epilepsy Severity Scale (E-CHESS) score was calculated, and a Global Assessment of Severity of Epilepsy (GASE) score was obtained for each patient.
  
  
  RESULTS
  The initial PREQ was modified based on the analysis of responses, association with previously validated scales, comments from caregivers, and expertise of the PREQ panelists. Pediatric Refractory Epilepsy Questionnaire subscale scores were calculated based on clinical paradigm and compared with independent measures of seizure severity and quality of life. Significant correlations were observed between the seizure severity subscale and the GASE score (r=0.55) and between the mood subscale and the well-being score (r=0.61) on the QOLCE. Significant correlations were also observed between the caregiver rating of seizure severity and the GASE score (r=0.53), the social activity score (r=0.57), and the behavior score (r=0.43) on the QOLCE. Correlations between the caregiver rating of quality of life and the quality of life score (r=0.58) and the number of AEDs used (r=0.45) were also significant.
  
  
  CONCLUSIONS
  This pilot study is an initial, critical step in the development of the PREQ. The significant correlations between the PREQ subscales and the external epilepsy severity and quality of life measures lend preliminary support to our hypothesis that the PREQ is assessing the severity of epilepsy along with other important domains, such as mood, neurodevelopment, and quality of life. A larger prospective study of this modified PREQ is currently underway to further develop the PREQ.
authors: Division of Biology and Biomedical Sciences, Washington University in St. Louis Graduate School of Arts and Sciences, St. Louis, MO, USA. Electronic address: purusothamanv@wusm.wustl.edu.
authors: Vaishnavi
authors: V
authors: Purusothaman
authors: Department of Neurology, Saint Louis Children's Hospital, Washington University in St. Louis School of Medicine, St. Louis, MO, USA.
authors: Robin C C
authors: RC
authors: Ryther
authors: Department of Neurology, Saint Louis Children's Hospital, Washington University in St. Louis School of Medicine, St. Louis, MO, USA.
authors: Mary
authors: M
authors: Bertrand
authors: Department of Psychology, Saint Louis Children's Hospital, Washington University in St. Louis School of Medicine in St. Louis, St. Louis, MO, USA.
authors: Lisa A
authors: LA
authors: Harker
authors: Division of General Medical Sciences, Department of Medicine, Washington University in St. Louis, School of Medicine St. Louis, MO, USA.
authors: Donna B
authors: DB
authors: Jeffe
authors: Division of Biostatistics, Washington University in St. Louis School of Medicine in St. Louis, St. Louis, MO, USA.
authors: Michael
authors: M
authors: Wallendorf
authors: Department of Neurological Surgery, Saint Louis Children's Hospital, Washington University in St. Louis, School of Medicine St. Louis, MO, USA.
authors: Matthew D
authors: MD
authors: Smyth
authors: Department of Neurological Surgery, Saint Louis Children's Hospital, Washington University in St. Louis, School of Medicine St. Louis, MO, USA.
authors: David D
authors: DD
authors: Limbrick
mesh_terms: D000293:Adolescent; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data; D002648:Child; D002675:Child, Preschool; D004827:Epilepsy / Q000150:complications* / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D010865:Pilot Projects; D011446:Prospective Studies; D011788:Quality of Life; D015203:Reproducibility of Results; D012640:Seizures; D012720:Severity of Illness Index; D018434:Sickness Impact Profile; D011795:Surveys and Questionnaires
keywords: Epilepsy; Epilepsy surgery; Intractable; Medically refractory; Palliative epilepsy surgery; Questionnaire; Seizure