Neuro-Developmental Disabilities Screening and Assessment in Uganda

Background: Neuro-developmental disorders, including autism, are noted to be one of the greatest threats to global public health, especially in developing countries. In low resource settings, there is a paucity of data on the number of children affected by neuro-developmental disorders and their demographic characteristics. Obtaining data on autism spectrum disorders (ASD) is especially challenging, due to numerous factors, including higher priority causes of childhood morbidity and mortality, prevailing poverty and associated health, nutrition, and social factors, and cultural beliefs and practices that impact on community recognition and integration of ASD-affected individuals. Difficulties exist in establishing ASD diagnoses based on behavioral criteria and it is not clear whether clinical presentation is similar across diverse cultural settings, presenting an inherent circularity in attempting to adapt screening and diagnostic tools. Furthermore there are few clinical practitioners trained to diagnose ASD and provide appropriate advice to caregivers. Support services for parents and other family members are minimal. Despite these numerous challenges, we are initiating an ASD screening and assessment project in the sub-Saharan country of Uganda, nested in the context of a broader neuro-developmental screening and assessment project The Uganda project will focus on autistic spectrum disorders, cerebral palsy, epilepsy, mental retardation, speech and language disorders, hearing impairment, and visual impairment among 2-9 year old children.

Objectives:

• To develop and pilot, a screening and assessment tool for neuro-developmental disorders, including ASD, for use in Uganda.
  
• To develop a plan for a comprehensive training program and other local infrastructure requirements.
  
• To strengthen the research and clinical capacity of Ugandan researchers by establishing in-country and international networks.
  

Methods: For screening purposes, we will adapt and expand a neuro-developmental screening tool previously validated for use in low-resource settings, TQQ (Ten Questions Questionnaire), to include screening questions for ASD and speech and language disorders. These additional questions will be developed through a series of collaboration meetings with Ugandan and American clinicians. The expanded TQQ will be piloted in Uganda for use in door-to- door screening, to be followed by full clinical assessments of children who screen positive and a sample of children who screen negative to assess the sensitivity and specificity of the screening tool. Screening will be conducted in two districts in Uganda representing rural and urban communities. Culturally appropriate interventions will be provided following the clinical assessments.

Results: The focus of this presentation will be on the ASD and speech and language screening questions, how they were developed for this project, and on initial pilot testing of the questions. The clinical consensus criteria used to diagnose a child with ASD will be discussed.

Conclusions: The results of this study will provide important information on how the TQQ can be used to screen for ASD and other neuro-developmental disorders in a resource-poor African country. Data generated on the frequency and impact of these conditions will be used to advocate for appropriate sustainable services and prevention strategies.