Prevalence estimation of intellectual disability using national administrative and household survey data: The importance of survey question specificity

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Abstract

Background: Variability in prevalence estimation of intellectual disability has been attributed to heterogeneity in study settings, methodologies, and intellectual disability case definitions. Among studies based on national household survey data specifically, variability in prevalence estimation has partly been attributed to the level of specificity of the survey questions employed to determine the presence of intellectual disability. Specific aims & method: Using standardised difference scoring, the following study used ‘intellectual disability’ survey question data from the 2007 Northern Ireland Survey on Activity Limitation and Disability (NISALD) (N=23,689) and the 2011 Northern Ireland Census (N=1,770,217) to (i) demonstrate the effects of survey question specificity on intellectual disability prevalence estimation and (ii) produce reliable estimates of the geographic variation of intellectual disability within private households in Northern Ireland while also assessing the socio-demographic, health-related and disability characteristics of this population. Findings: Prevalence estimates generated using the more crudely classified intellectual disability Census data indicated a prevalence of 2% for the overall population, 3.8% for children aged between 0 and 15 years, and 1.5% for citizens aged 16 years or older. Intellectual disability prevalence estimates generated using the more explicitly defined 2007 NISALD data indicated a population prevalence of 0.5% for the overall population, 1.3% for children aged between 0 and 15 years, and 0.3% for citizens aged 16 years or older. The NISALD estimates were consistent with most recent international meta-analysis prevalence estimates. According to the NISALD data, the majority of those with an intellectual disability were male, lived outside Belfast, and experienced severe intellectual disability, with multiple comorbid health conditions. Discussion: The current findings highlight the importance of survey question specificity in the estimation of intellectual disability prevalence, provide more reliable prevalence estimates of intellectual disability in Northern Ireland, demonstrate the utility of administrative data for detecting and understanding intellectual disability, and inform recommendations on how to maximise use of future intellectual disability Census data.
Original languageEnglish
JournalInternational Journal of Population Data Science
Publication statusAccepted/In press - 9 Oct 2020

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