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, and 'intellectual disability' survey 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) the following study had two aims. First, we aimed to demonstrate the effects of survey question specificity on intellectual disability prevalence estimation. Second, we aimed to 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 and provide reliable prevalence estimates of intellectual disability in Northern Ireland. The findings also 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
Number of pages14
JournalInternational Journal of Population Data Science
Volume6
Issue number1
Early online date28 Jan 2021
DOIs
Publication statusE-pub ahead of print - 28 Jan 2021

Bibliographical note

Funding Information:
The help provided by the staff of the Northern Ireland Mortality Study (NIMS) and the Northern Ireland Longitudinal Study (NILS) Research Support Unit is acknowledged. The NIMS is funded by the Health and Social Care Research and Development Division of the Public Health Agency (HSC R&D Division) and NISRA. The NILS-RSU is funded by the ESRC and the Northern Ireland Government. The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of NISRA/NILS.

Funding Information:
The help provided by the staff of the Administrative Data Research Network Northern Ireland (ADRC-NI) and the Northern Ireland Statistics and Research Agency (NISRA) Research Support Unit is acknowledged. The ADRC-NI is funded by the Economic and Research Council (ESRC). The authors alone are responsible for the interpretation of the data and any views or opinions presented are solely those of the author and do not necessarily represent those of the ADRC-NI. The NIMS data has been supplied for the sole purpose of this project.

Publisher Copyright:
© The Authors. Open Access under CC BY 4.0 (https://creativecommons.org/licenses/by/4.0/deed.en)

Copyright:
Copyright 2021 Elsevier B.V., All rights reserved.

Keywords

  • intellectual disability
  • census data
  • administrative data
  • household probability survey
  • northern ireland

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