title: Health care utilization and outpatient, out-of-pocket costs for active convulsive epilepsy in rural northeastern South Africa: a cross-sectional Survey.
abstract: Epilepsy is a common neurological disorder, with over 80 % of cases found in low- and middle-income countries (LMICs). Studies from high-income countries find a significant economic burden associated with epilepsy, yet few studies from LMICs, where out-of-pocket costs for general healthcare can be substantial, have assessed out-of-pocket costs and health care utilization for outpatient epilepsy care.
  
  
  
  Within an established health and socio-demographic surveillance system in rural South Africa, a questionnaire to assess self-reported health care utilization and time spent traveling to and waiting to be seen at health facilities was administered to 250 individuals, previously diagnosed with active convulsive epilepsy. Epilepsy patients' out-of-pocket, medical and non-medical costs and frequency of outpatient care visits during the previous 12-months were determined.
  
  
  
  Within the last year, 132 (53 %) individuals reported consulting at a clinic, 162 (65 %) at a hospital and 34 (14 %) with traditional healers for epilepsy care. Sixty-seven percent of individuals reported previously consulting with both biomedical caregivers and traditional healers. Direct outpatient, median costs per visit varied significantly (p < 0.001) between hospital (2010 International dollar ($) 9.08; IQR: $6.41-$12.83) and clinic consultations ($1.74; IQR: $0-$5.58). Traditional healer fees per visit were found to cost $52.36 (IQR: $34.90-$87.26) per visit. Average annual outpatient, clinic and hospital out-of-pocket costs totaled $58.41. Traveling to and from and waiting to be seen by the caregiver at the hospital took significantly longer than at the clinic.
  
  
  
  Rural South Africans with epilepsy consult with both biomedical caregivers and traditional healers for both epilepsy and non-epilepsy care. Traditional healers were the most expensive mode of care, though utilized less often. While higher out-of-pocket costs were incurred at hospital visits, more people with ACE visited hospitals than clinics for epilepsy care. Promoting increased use and effective care at clinics and reducing travel and waiting times could substantially reduce the out-of-pocket costs of outpatient epilepsy care.
authors.affiliation: Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) - INDEPTH Network, Accra, Ghana. Ryan.wagner@wits.ac.za.|MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa. Ryan.wagner@wits.ac.za.|Epidemiology and Public Health Sciences, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden. Ryan.wagner@wits.ac.za.
authors.forename: Ryan G
authors.initials: RG
authors.lastname: Wagner
authors.affiliation: World Health Organization, Geneva, Switzerland.
authors.forename: Melanie Y
authors.initials: MY
authors.lastname: Bertram
authors.affiliation: MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.|International Network for the Demographic Evaluation of People and their Health (INDEPTH) Network, Accra, Ghana.
authors.forename: F Xavier
authors.initials: FX
authors.lastname: Gómez-Olivé
authors.affiliation: Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) - INDEPTH Network, Accra, Ghana.|MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.|Epidemiology and Public Health Sciences, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.|International Network for the Demographic Evaluation of People and their Health (INDEPTH) Network, Accra, Ghana.
authors.forename: Stephen M
authors.initials: SM
authors.lastname: Tollman
authors.affiliation: Epidemiology and Public Health Sciences, Department of Public Health and Clinical Medicine, Umeå University, Umeå, Sweden.
authors.forename: Lars
authors.initials: L
authors.lastname: Lindholm
authors.affiliation: Studies of Epidemiology of Epilepsy in Demographic Surveillance Systems (SEEDS) - INDEPTH Network, Accra, Ghana.|MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.|KEMRI/Wellcome Trust Research Programme, Centre for Geographic Medicine Research - Coast, Kilifi, Kenya.|Neurosciences Unit, UCL Institute of Child Health, London, United Kingdom.|Clinical Research Unit, London School of Hygiene and Tropical Medicine, London, United Kingdom.|Department of Psychiatry, University of Oxford, Oxford, United Kingdom.
authors.forename: Charles R
authors.initials: CR
authors.lastname: Newton
authors.affiliation: MRC/Wits Rural Public Health & Health Transitions Research Unit (Agincourt), School of Public Health, Faculty of Health Sciences, University of the Witwatersrand, Johannesburg, South Africa.|Priority Cost-effective Lessons for Systems Strengthening (PRICELESS), Johannesburg, South Africa.
authors.forename: Karen J
authors.initials: KJ
authors.lastname: Hofman
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D000553:Ambulatory Care / Q000191:economics*; D017028:Caregivers; D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D003695:Delivery of Health Care / Q000191:economics; D003710:Demography; D004829:Epilepsy, Generalized / Q000191:economics* / Q000628:therapy; D005249:Fees and Charges; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006801:Humans; D007182:Income; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D010045:Outpatients; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D012423:Rural Health / Q000191:economics; D013019:South Africa; D011795:Surveys and Questionnaires; D014195:Travel / Q000191:economics; D055815:Young Adult
keywords: Africa; Chronic disease; Direct medical costs; Indirect medical costs; Population-based