Autism and Other Developmental Disabilities In Uganda: Household Screening and Pediatric Assessment

Background: Autism and other developmental disabilities present a substantial challenge in low-resource settings. Limited available data indicate that prevalence may be considerably higher in developing countries than in industrialized settings.  The lack of local prevalence data greatly hampers efforts to advocate and plan for effective services to identify children at risk and provide interventions. Obtaining data on autism spectrum disorders (ASD) is especially challenging, due to numerous factors including lack of trained practitioners and prevailing cultural beliefs and practices that impact identification and diagnosis of affected children. Furthermore, it is uncertain whether clinical presentation is similar across diverse cultural settings. We have been conducting a screening and assessment program for ASD and other developmental disabilities among children 2-9 years of age in the sub-Saharan country of Uganda in rural and urban communities. Results from door-to-door screening and follow-up pediatric assessments will be presented.

Objectives:

To describe data collection design, procedures, and tools, including screening questions for ASD used in this project.
To present data on number and characteristics of children screened for 7 developmental disabilities (ASD, hearing, vision, cerebral palsy, epilepsy, speech, mental retardation).
To compare the results of the screening to specialty referrals made by the project Medical Officers who conducted general pediatric exams for children who screened positive and a sample of those who screened negative. 
To discuss obstacles and barriers that we encountered during field data collection.

Methods: For door-to-door screening of children 2-9 years of age, we adapted and expanded the Ten Question screener, previously validated for use in low-resource settings. In particular, we added questions designed to screen for ASD that were developed through collaboration among Ugandan and American clinicians and piloted among parents in Uganda.  Following screening, a general pediatric assessment was conducted by project Medical Officers for children who screened positive and a sample of children who screened negative to assess the sensitivity and specificity of the screening tool relative to exam findings. Specialty medical examinations are now underway for children who met project criteria for one or more developmental disabilities based on referrals from the Medical Officer Exams. When specialty exams are completed, these specialty diagnoses will also be compared to initial screening results.

Results:  In the rural communities, 561 children aged 2-9 years from 284 households were screened and 354 of these children underwent the Medical Officer Exam. In the urban communities, 568 children from 405 households were screened and 356 of these children underwent the Medical Officer Exam.  Among the examined children, preliminary tallies indicate that 23 children were identified as needing a specialty referral for ASD. The presentation will include detailed description of the responses to the expanded TQ screener and compare the screening responses to the clinical data obtained in the Medical Officer Exam.

Conclusions: The results of this study will provide important information on how the expanded TQ can be used to screen for ASD and other neuro-developmental disorders in a resource-poor African country.