Are People with Intellectual Disabilities Represented in European Public Health Surveys?

Abstract

Background Evidence suggests that people with intellectual disabilities experience secondary health conditions and report inequities in health status and access to health systems. Reliable information is essential to identify health disparities. A review of health interview and health examination surveys conducted in 17 European countries was undertaken to determine whether people with intellectual disabilities were represented. Method Using the online HIS HES database, 123 health surveys were scrutinized to determine whether they contained questions relevant to the Pomona 18 indicator set, and whether data could be extracted specifically on behalf of respondents with intellectual disabilities.Results Findings reveal that while items relating to 16 of the Pomona 18 health indicators were found in 123 of the surveys scrutinized, only nine surveys were identified as having potential to extract data on respondents with intellectual disabilities. Conclusion These findings have implications for those charged with the collection of comparable information about population health.

Health Surveillance and People with Intellectual Disabilities

“…However, as noted in the introduction, people with intellectual disabilities are rarely identifiable in existing health surveys (Fujiura, Rutkowski-Kmitta, & Owen, 2010;Linehan et al, 2009). Three approaches for improving the identification of respondents with intellectual disabilities are considered in the following subsections:…”

“…Unfortunately, people with intellectual disabilities are largely invisible within many existing health surveillance systems. For example, a review of 123 European health surveys reported that only 7 (8%) contained items that had the potential to identify respondents with intellectual disability (Linehan et al, 2009). Similarly, administrative data collected by health-care systems often fails to record that patients have intellectual disabilities.…”

“…The importance of addressing the invisibility of people with intellectual disabilities in existing health surveillance systems is being increasingly recognized with a number of specific initiatives being undertaken in the UK, North America, and elsewhere (e.g., Centers for Disease Control and Prevention (CDC), 2011; Centers for Disease Control and Prevention (CDC) & National Center on Birth Defects and Developmental Disabilities (NCBDDD) Health Surveillance Work Group, 2009;Glover, Emerson, & Baines, 2011;Krahn, Fox, Campbell, Ramon, & Jesien, 2010;Lunsky, Klein-Geltink, & Yates, 2013). The aim of this chapter is to briefly review the nature of three of these initiatives and discuss some of the key methodological issues involved in developing health surveillance systems for people with intellectual disabilities.…”

Racial healthcare disparities: A social psychological analysis

“…However, race/ethnicity is not the only group characteristic that has been linked to healthcare disparities. For example, patients who have lower socioeconomic status (SES) have developmental, mental or physical disabilities, are elderly, are members of certain religions, and/or are gay, lesbian, bisexual, or transgendered all experience healthcare disparities (Daponte-Codia et al, 2008; Dilley, Simmons, Boysun, Pizacari, & Stark, 2010; Lahelma & Lunberg, 2009; Linehan, Walsh, Van Schrojenstein Lantman-de Valk, Kerr, & Dawson, 2009; Mobaraki & Söderfeldt, 2010; Obeidat et al, 2010). Because we base our analysis on generalizable psychological processes and intergroup dynamics, we believe that most of the models and theories we present can be readily applied to these other forms of bias and healthcare disparities beyond those involving race/ethnicity.…”

Life‐Threatening Disparities: The Treatment of Black and White Cancer Patients

“…Furthermore, while we primarily address Black–White disparities, ethnicity/race is not the only group characteristic that has been linked to health care disparities. For example, in the United States and other countries, attributes such as sexual orientation (Dilley, Simmons, Boysun, Pizacari, & Stark, 2010), age (Obeidat et al, 2010), gender (Mobaraki & Söderfeldt, 2010), and developmental disabilities (Linehan, Walsh, van Schrojenstein Lantman-de Valk, Kerr, & Dawson, 2009) have all been associated with disparities in health. In the conclusion to this article, we will briefly consider the implications of the findings discussed in this article for other countries and other groups besides Blacks with cancer in the United States.…”