title: A pediatric epilepsy diagnostic tool for use in resource-limited settings: A pilot study.
abstract: It is estimated that nearly 80% of the 50 million people affected with epilepsy globally live in regions where specialist care and diagnostic tests are scarce and care is often delivered through a primary health provider with limited training. To improve diagnostic accuracy of the history and physical examination, we developed and piloted a questionnaire to discriminate between focal versus generalized epilepsy, with the future goal to guide medication choices.
  
  
  
  Through literature review and retrospective chart review of 75 children with epilepsy at Boston Children's Hospital, a 15-item questionnaire was developed. Simple motor seizures were excluded for the purposes of this questionnaire. The questionnaire was then translated in local dialects and prospectively validated at Muhimbili National Hospital in Dar Es Salaam, Tanzania, and University Teaching Hospital in Lusaka, Zambia. Children 6months-18years of age with suspected or active epilepsy were identified, and a nonphysician administered the questionnaire to the patient's caregiver. Next, each patient was evaluated by a pediatric neurologist blinded to the questionnaire results, and together with locally obtained but remotely interpreted EEG, an electroclinical diagnosis was made. The questionnaire data were compared with this clinical gold standard.
  
  
  
  A total of 59 children participated: 28 from Tanzania and 31 from Zambia. Sixteen patients were excluded: 5 were excluded because of incomplete data, and 11 did not meet criteria for epilepsy based on initial screening questions. Of the remaining 43 patients, 28 had focal or multifocal epilepsy (65%), and 15 (35%) had generalized epilepsy. The questionnaire had a sensitivity of 78% and positive predictive value of 81.5%. Data were analyzed using a Rasch model, testing the questionnaire's internal consistency, reliability, and its discriminative validity in classifying focal versus generalized epilepsy against an electroclinical diagnosis. The mean epilepsy score for focal epilepsy was 0.084 logits compared with -1.147 logits for generalized epilepsy, demonstrating a large effect size [F (1, 41)=13.490, p<0.001].
  
  
  
  Our questionnaire provides a straightforward method to improve diagnostic accuracy, and could assist in bridging the diagnostic gap in pediatric epilepsy in resource-limited settings. This tool was specifically designed to be easily implemented by any healthcare provider. This pilot study prompts broader prospective validation in additional settings for further refinement, and for performance assessment of impact on provider's practice, ability to guide medication choices, and ultimately improve treatment outcomes in resource-limited regions.
authors.affiliation: Boston Children's Hospital, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Harvard Medical School, Boston, MA, United States. Electronic address: archana.patel@childrens.harvard.edu.
authors.forename: Archana A
authors.initials: AA
authors.lastname: Patel
authors.affiliation: Paediatric Centre of Excellence, University Teaching Hospital, Lusaka, Zambia.
authors.forename: Ornella
authors.initials: O
authors.lastname: Ciccone
authors.affiliation: Muhimbili University of Health and Allied Sciences, Dar Es Salaam, Tanzania.
authors.forename: Adrian
authors.initials: A
authors.lastname: Njau
authors.affiliation: Paediatric Centre of Excellence, University Teaching Hospital, Lusaka, Zambia.
authors.forename: Sandra
authors.initials: S
authors.lastname: Shanungu
authors.affiliation: Paediatric Centre of Excellence, University Teaching Hospital, Lusaka, Zambia.
authors.forename: Alice Kabwe
authors.initials: AK
authors.lastname: Grollnek
authors.affiliation: Muhimbili University of Health and Allied Sciences, Dar Es Salaam, Tanzania; Muhimbili National Hospital, Department of Pediatrics, Dar Es Salaam, Tanzania.
authors.forename: Francis
authors.initials: F
authors.lastname: Fredrick
authors.affiliation: Boston Children's Hospital, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Harvard Medical School, Boston, MA, United States.
authors.forename: Ryan
authors.initials: R
authors.lastname: Hodgeman
authors.affiliation: Boston Children's Hospital, Department of Pediatrics, Harvard Medical School, Boston, MA, United States.
authors.forename: Georgios D
authors.initials: GD
authors.lastname: Sideridis
authors.affiliation: Boston Children's Hospital, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Harvard Medical School, Boston, MA, United States.
authors.forename: Kush
authors.initials: K
authors.lastname: Kapur
authors.affiliation: Boston Children's Hospital, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Harvard Medical School, Boston, MA, United States.
authors.forename: Chellamani
authors.initials: C
authors.lastname: Harini
authors.affiliation: Muhimbili National Hospital, Department of Pediatrics, Dar Es Salaam, Tanzania.
authors.forename: Edward
authors.initials: E
authors.lastname: Kija
authors.affiliation: Boston Children's Hospital, Department of Neurology, Division of Epilepsy and Clinical Neurophysiology, Harvard Medical School, Boston, MA, United States.
authors.forename: Jurriaan M
authors.initials: JM
authors.lastname: Peters
mesh_terms: D000293:Adolescent; D017028:Caregivers; D002648:Child; D003937:Diagnosis, Differential; D004827:Epilepsy / Q000175:diagnosis*; D004829:Epilepsy, Generalized / Q000175:diagnosis; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D010865:Pilot Projects; D015203:Reproducibility of Results; D012189:Retrospective Studies; D012640:Seizures / Q000175:diagnosis; D011795:Surveys and Questionnaires; D013636:Tanzania; D015024:Zambia
keywords: Child; Epilepsy; Global health; Health resources; Questionnaire