TABLE 2.
Examples of promising practices in literature using administrative data for estimating prevalence of intellectual disabilities, by country, 2000–2015
| Country and citation | Number of numerator data sourcesa | Linkageb | Unique identifierc | Demographic detaild | Ongoing researche |
|---|---|---|---|---|---|
| Australia | |||||
| Leonard et al. (2003) “Prevalence of intellectual disability in Western Australia” | 3 (disability services-1, education-2) | Yes | No | Yes (age, sex, race, urban/rural) | Yes (Maternal and Child Health Research Data Base, Intellectual Disability Exploring Answers) |
| Canada | |||||
| Ouellette-Kuntz et al. (2010) “Estimating administrative prevalence of intellectual disabilities in Manitoba” | 4 (healthcare-2, education-1, social services-1) | Yes | Yes (provincial Personal Health Identifier Number) | Yes (age) | Yes (Manitoba Population Health Research Data Repository) |
| Finland | |||||
| Heikura et al. (2003) “Temporal changes in incidence and prevalence of intellectual disability between two birth cohorts in northern Finland” | 4 (healthcare-2, social services-1, interviews-1) | Not specified | Not specified | Yes (sex) | Yes (two birth cohorts, separated by 20 years) |
| Westerinen et al. (2007) “Prevalence of intellectual disability: a comprehensive study based on national registers” | 8 (social services-7, healthcare-1) | Yes | Yes (national Social Security Code) | Yes (age, sex) | Yes (national registers) |
| Netherlands | |||||
| van Schrojenstein Lantman-de Valk et al. (2006) “The prevalence of intellectual disability in Limburg, the Netherlands” & Wullink et al. (2007) “Prevalence of people with intellectual disability in the Netherlands” | 4 (social services- 3, healthcare-1) | Not specified | Not specified | Yes (age, sex) | No |
| United States | |||||
| Bhasin et al. (2006) “Prevalence of four developmental disabilities among children aged 8 years—Metropolitan Atlanta Developmental Disabilities Surveillance Program, 1996 and 2000” & Van Naaden Braun et al. (2015) | 6 (education-2, social services-1, healthcare-3) | Yes | No | Yes (sex, race, socioeconomic status, birth characteristics) | Yes (Metropolitan Atlanta Developmental Disabilities Surveillance Program) |
a
Total number of data sources (number of data sources by type).
b
Linkage of numerator data sources to estimate prevalence.
c
Unique personal identifier used for linkage.
d
Prevalence estimates provided for demographic subgroups.
e
Research based on ongoing program.