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

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Title: Are People with Intellectual Disabilities Represented in European Public Health Surveys?
Language: English
Authors: Linehan, Christine, Walsh, P. N., Van Schrojenstein Lantman-de Valk, H. M. J., Kerr, M. P., Dawson, Frances
Source: Journal of Applied Research in Intellectual Disabilities. Sep 2009 22(5):409-420.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Page Count: 12
Publication Date: 2009
Document Type: Journal Articles
Reports - Evaluative
Descriptors: Mental Retardation, Public Health, Foreign Countries, National Surveys, Access to Health Care, Interviews, Sampling, Data Collection
DOI: 10.1111/j.1468-3148.2009.00521.x
ISSN: 1360-2322
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.
Abstractor: As Provided
Entry Date: 2009
Accession Number: EJ851095
Database: ERIC
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  Value: <anid>AN0043669025;e0301sep.09;2019Jun04.08:08;v2.2.500</anid> <title id="AN0043669025-1">Are People with Intellectual Disabilities Represented in European Public Health Surveys? </title> <p>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.</p> <p>Keywords: health surveys; intellectual disabilities; mental retardation; health monitoring</p> <p>Health disparities are evident when people with intellectual disabilities are compared with their peers who do not have intellectual disabilities. Yet efforts to bridge two fields of enquiry – the health of people with intellectual disabilities, and public health efforts to reduce health disparities – have strengthened only recently ([<reflink idref="bib9" id="ref1">9</reflink>]). Many observed differences in health between groups are not only avoidable, but unfair, and these differences comprise health inequities ([<reflink idref="bib51" id="ref2">51</reflink>]; [<reflink idref="bib31" id="ref3">31</reflink>]). Health information systems are necessary for identifying and understanding health inequities to promote health equity among more or less socially disadvantaged groups ([<reflink idref="bib1" id="ref4">1</reflink>]). [<reflink idref="bib18" id="ref5">18</reflink>] has urged the research community to address apparent boundaries between public health research and the study of intellectual disabilities if the task of understanding how the health of people with intellectual disabilities is compromised by social disadvantage.</p> <p>People with intellectual disabilities comprise a group within the populations of all countries at risk of significant social disadvantage. An emergent question is: do information systems yield useful health data on behalf of this group that are comparable with health data for the general population? This article presents the outcomes of a review of European health surveys to determine whether current public health information systems can help to identify health disparities among people with intellectual disabilities.</p> <hd id="AN0043669025-2">Health disparities and disability</hd> <p>Health disparities are evident when people with disabilities, in general, are compared with their peers. Arguably, an earlier presumption that disability is itself a disease state contributed to widespread neglect of health promotion or targeted disease prevention activities ([<reflink idref="bib34" id="ref6">34</reflink>]). An emerging perspective is that multiple and complex factors associated with access to care, identification of disease and treatment availability contribute to negative health disparities among people with disabilities. They are more likely to experience secondary health conditions ([<reflink idref="bib20" id="ref7">20</reflink>]) and incur a higher risk of poor health status ([<reflink idref="bib7" id="ref8">7</reflink>]). Chronic pain, sleep problems, weight problems, fatigue, depression, skin problems, falls and other conditions have been found to be 2–3 times more prevalent among adults with disabilities ([<reflink idref="bib25" id="ref9">25</reflink>]).</p> <p> <emph>Healthy People</emph> 2010, a government‐led initiative of national health objectives for the people of the United States, identifies the relative paucity of data on people with disabilities as a subpopulation, although disparities such as excess weight, reduced physical activity, increased stress, and less frequent mammograms for women over age 55 years with disabilities have been documented ([<reflink idref="bib47" id="ref10">47</reflink>]). Disparities must be identified to plan appropriate public health programs, and to reduce health disparities – one of two main goals of <emph>Healthy People</emph> 2010.</p> <hd id="AN0043669025-3">People with intellectual disabilities</hd> <p>People with intellectual disabilities experience increased morbidity and unequal health outcomes ([<reflink idref="bib36" id="ref11">36</reflink>]). As [<reflink idref="bib3" id="ref12">3</reflink>] have summarized:</p> <p>People with intellectual disabilities have a different pattern of health need. For example, epilepsy, gastro‐oesophageal reflux disorder, sensory impairments, osteoporosis, schizophrenia, dementia, dysphagia, dental disease, musculoskeletal problems, accidents, and nutritional problems are all much more commonly experienced. Conversely, health problems related to smoking, alcohol, and use of illegal drugs are uncommon (p. 414).</p> <p>The implications of these patterns of prevalence are widespread, for example, for clinicians and other health professionals. Those patients with intellectual disabilities who were recorded on a general practice database in the Netherlands had 2.5 times more health problems when compared with other adults on the same register ([<reflink idref="bib38" id="ref13">38</reflink>]). Different patterns in morbidity, number of visits to GP (general practitioners or primary care physicians) and repeat prescriptions on behalf of individuals with intellectual disabilities are likely to have an impact on primary health care practice ([<reflink idref="bib43" id="ref14">43</reflink>]).</p> <p>Higher rates of obesity ([<reflink idref="bib19" id="ref15">19</reflink>]; [<reflink idref="bib6" id="ref16">6</reflink>]; [<reflink idref="bib22" id="ref17">22</reflink>]; [<reflink idref="bib35" id="ref18">35</reflink>]), mental health disorders ([<reflink idref="bib8" id="ref19">8</reflink>]; [<reflink idref="bib50" id="ref20">50</reflink>]; [<reflink idref="bib28" id="ref21">28</reflink>]), and lower rates of cardiovascular fitness ([<reflink idref="bib14" id="ref22">14</reflink>]), vaccination levels ([<reflink idref="bib37" id="ref23">37</reflink>]) and preventive health screening ([<reflink idref="bib2" id="ref24">2</reflink>]; [<reflink idref="bib52" id="ref25">52</reflink>]; [<reflink idref="bib24" id="ref26">24</reflink>]; [<reflink idref="bib13" id="ref27">13</reflink>]; [<reflink idref="bib23" id="ref28">23</reflink>]) have been identified for this population. The presence of disability may yield diagnostic overshadowing ([<reflink idref="bib4" id="ref29">4</reflink>]; [<reflink idref="bib16" id="ref30">16</reflink>]; [<reflink idref="bib17" id="ref31">17</reflink>]; [<reflink idref="bib33" id="ref32">33</reflink>]; [<reflink idref="bib29" id="ref33">29</reflink>]). Visual and dental care needs are often undetected and untreated ([<reflink idref="bib30" id="ref34">30</reflink>]; [<reflink idref="bib44" id="ref35">44</reflink>]; [<reflink idref="bib40" id="ref36">40</reflink>]). In her comprehensive review of literature, [<reflink idref="bib15" id="ref37">15</reflink>] concluded that people with intellectual disabilities are doubly disadvantaged as dental or medical treatments may be withdrawn because of behavioural issues ([<reflink idref="bib5" id="ref38">5</reflink>]; [<reflink idref="bib40" id="ref39">40</reflink>]). Arguably, discrimination, stigmatization and stereotypical beliefs regarding people with intellectual disabilities ([<reflink idref="bib32" id="ref40">32</reflink>]; [<reflink idref="bib21" id="ref41">21</reflink>]) are among the factors likely to contribute to their unmet health needs.</p> <hd id="AN0043669025-4">Health information and intellectual disability</hd> <p>While individual Member States of the European Union retain primary responsibility for the health services provided to their citizens, actions at EU level aim to strengthen cooperation and coordination, and to support the exchange of evidence‐based information and knowledge. Recent activities in the domain of health information have focused on the development of health indicators to facilitate reliable health monitoring and comparisons of population health within and across countries ([<reflink idref="bib26" id="ref42">26</reflink>]).</p> <p>The invisibility of people with intellectual disabilities – an estimated 5 million persons or 1% of the population of the EU 27 Member States – in public health data sets has been documented ([<reflink idref="bib36" id="ref43">36</reflink>]), suggesting that an absence of comparable information exacerbates negative disparities in health. However, the <emph>prima facie</emph> evidence is that persons with intellectual disabilities are rarely identified within population surveys of larger disability samples. They are typically absent from public health surveys. Attempts to monitor their health have hitherto been sporadic or accomplished through community studies and convenience samples. Yet the inclusion of people with intellectual disabilities within National Health Interview (HIS) and Health Examination (HES) Surveys of population health has been identified as a potentially valuable resource to identify disparities ([<reflink idref="bib36" id="ref44">36</reflink>]). Reliable information about this segment of the population is needed to determine health status and health care needs, to ensure comparability; and to promote equity.</p> <hd id="AN0043669025-5">Health Surveys in Europe</hd> <p>Identifying people with disabilities within health surveys is a potentially valuable strategy to amass information needed to advance health equity ([<reflink idref="bib1" id="ref45">1</reflink>]), arguably a multidimensional concern far beyond a focus on health care ([<reflink idref="bib41" id="ref46">41</reflink>]). EU Public Health Strategy addresses the reduction of health inequalities, setting goals for the European Health Survey System (EHSS). These are: to identify health problems; describe health status and needs; estimate prevalence and distribution of health indicators; analyse social (in) equality in health and access to health services; study healthcare consumption and its determinants; and study possible population trends in health status lifestyle and service use ([<reflink idref="bib10" id="ref47">10</reflink>]). A key element of the EHSS is The European Core Health Interview Survey (ECHIS), capturing information through five modules:</p> <p></p> <ulist> <item> • </item> <p></p> <item> Mini European Health Module (MEHM).</item> <p></p> <item> • </item> <p></p> <item> European module on health status (ECMHS).</item> <p></p> <item> • </item> <p></p> <item> European Health Determinants Module (EHDM).</item> <p></p> <item> • </item> <p></p> <item> European Health Care Module (EHCM).</item> <p></p> <item> • </item> <p></p> <item> European Background Module (EBM).</item> </ulist> <p>The European Health Interview & Health Examination Surveys Database (<ulink href="http://www.iph.fgov.be/his/hes">http://www.iph.fgov.be/his/hes</ulink>) falls within the remit of the European Health Survey System steering committee. It represents an inventory of health surveys in EU Member States, EFTA countries – such as Norway – and countries of other regions (USA, Canada and Australia). Currently, the United Nations Washington Group and EUROSTAT are developing disability‐specific items/modules for Health Information and Health Examination Surveys.</p> <p>Partners in <emph>Pomona</emph> 1 (2002–2004), funded by the European Commission DG1 Health and Consumer Protection (2002/203496‐00), developed an evidence‐based set of 18 health indicators specific to people with intellectual disabilities ([<reflink idref="bib49" id="ref48">49</reflink>]; [<reflink idref="bib27" id="ref49">27</reflink>]; [<reflink idref="bib11" id="ref50">11</reflink>]). The project took its name from the Roman goddess of fruitfulness. Their approach mirrored that of the European Community Health Indicators (ECHI) project, which yielded a set of health indicators for the general population throughout Europe ([<reflink idref="bib26" id="ref51">26</reflink>]; [<reflink idref="bib39" id="ref52">39</reflink>]). The <emph>Pomona</emph> health indicators are classified under four categories: demographic characteristics; health status; health determinants; and health systems (Table 1). Items relating to occupation, living arrangement, mental health, mobility and health checks, for example, are typical in health surveys of the general population.</p> <p>1  Indicator set for adults with intellectual disability developed during Pomona 1 (2002–2004)</p> <p> <ephtml> <table><thead valign="bottom"><tr><th>Category</th><th>Indicator</th></tr></thead><tbody valign="top"><tr><td valign="top">Demographic</td><td>Prevalence</td></tr><tr><td>Living arrangement</td></tr><tr><td>Daily occupation/employment</td></tr><tr><td>Income/socio economic status</td></tr><tr><td>Life expectancy</td></tr><tr><td valign="top">Health status</td><td>Epilepsy</td></tr><tr><td>Oral health</td></tr><tr><td>Body mass index</td></tr><tr><td>Mental health</td></tr><tr><td>Sensory</td></tr><tr><td>Mobility</td></tr><tr><td valign="top">Determinants</td><td>Physical activity</td></tr><tr><td>Challenging behaviour</td></tr><tr><td>Psychotropic medication</td></tr><tr><td valign="top">Systems</td><td>Hospitalisation and contact with professionals</td></tr><tr><td>Health check</td></tr><tr><td>Health promotion</td></tr><tr><td>Training of health professionals</td></tr></tbody></table> </ephtml> </p> <p>As they comprise an especially disadvantaged group with evident health disparities people with intellectual disabilities should be identified specifically in health information surveys, rather than subsumed under the larger, more diverse group of people with disabilities ([<reflink idref="bib36" id="ref53">36</reflink>]). Given the expansion of health surveys in Europe, it is timely to ask: Are people with intellectual disabilities represented in this very widespread, multi‐element system of health information?</p> <hd id="AN0043669025-6">This paper</hd> <p>This paper reports the findings of a critical review of the database of Health Information and Health Examination Surveys – prepared by the Epidemiology Unit, Scientific Institute of Public Health, Belgium – to investigate current monitoring of the health of people with intellectual disabilities. Specifically, the aim was to determine whether there is evidence to support a view that people with intellectual disabilities are 'invisible' in European health surveys.</p> <p>Two research questions were addressed: (<reflink idref="bib1" id="ref54">1</reflink>) Does the survey contain questions addressing the <emph>Pomona</emph> set of 18 health indicators? (<reflink idref="bib2" id="ref55">2</reflink>) Is it feasible, according to expert informants identified on the HIS/HES database, to extract data that specifically relate to people with intellectual disabilities for each survey?</p> <hd id="AN0043669025-7">Method</hd> <p>Health Interview Surveys and Health Examination Surveys (HIS and HES) were originally reviewed in October 2004 in respect of the 13 countries represented in <emph>Pomona</emph> I (2002–2004). These findings were updated regularly until May 2007, with the addition of surveys conducted in the countries participating in <emph>Pomona</emph> II (2005–2008). A total of 17 countries were represented across both projects: Austria, Belgium, Denmark, Finland, France, Germany, Ireland, Italy, Lithuania, Luxembourg, the Netherlands, Norway, Romania, Slovenia, Spain, Sweden and the UK.</p> <hd id="AN0043669025-8">Sources of data‐sampling frame</hd> <p>The most comprehensive inventory of health surveys in Europe is the European Health Interview & Health Examination Surveys Database https://<ulink href="http://www.iph.fgov.be/his/hes">www.iph.fgov.be/his/hes</ulink>. This database includes all major surveys by country: some adult specific, some child specific, some inclusive of all ages. The database is the outcome of a European Union Health Monitoring Programme project conducted in 2000 whose reports, 'Health surveys in the European Union: European Health Interview & Health Examination Surveys (HIS and HIS/HES) evaluations and models (phase 1 and phase 2)' may be accessed at <ulink href="http://europa.eu.int/comm/health/">http://europa.eu.int/comm/health/</ulink>.</p> <p>Health surveys include:</p> <p></p> <ulist> <item> • </item> <p></p> <item> Surveys aiming to give a complete picture of health, medical consumption, lifestyle and preventive behaviour.</item> <p></p> <item> • </item> <p></p> <item> Surveys with a significant health or health related component, like surveys on impairment, disability and handicaps.</item> <p></p> <item> • </item> <p></p> <item> Multipurpose surveys.</item> <p></p> <item> • </item> <p></p> <item> Living conditions surveys.</item> <p></p> <item> • </item> <p></p> <item> Health related questions of the European Community Household Panel (ECHP) and Eurobarometer, a programme of comparative social research conducted on behalf of the European Commission.</item> </ulist> <hd id="AN0043669025-9">Procedure</hd> <p>A systematic search of surveys appearing on the HIS HES database that were conducted in 17 countries participating in both <emph>Pomona</emph> I and <emph>Pomona</emph> II was undertaken. Each was scrutinized to ascertain:</p> <p></p> <ulist> <item> • </item> <p></p> <item> the presence of content relating to the <emph>Pomona</emph> health indicators (Table 1).</item> <p></p> <item> • </item> <p></p> <item> the inclusion of atypical respondents, specifically 'people from institutions for people with mental handicap' and proxy respondents for 'adults not at home', 'adults not able to reply' and 'institutionalized groups'.</item> <p></p> <item> • </item> <p></p> <item> the presence of items that would allow for the identification of respondents with intellectual disabilities.</item> </ulist> <p>In addition, an expert informant as identified on the HIS HES database for each survey was contacted by email or telephone and asked whether people with intellectual disabilities were included in the survey sample and – if so – whether data on this group might be disaggregated. Most consultations were in English (<emph>n</emph> = 110) with a minority in French (<emph>n</emph> = 8), Spanish (<emph>n</emph> = 3) and Italian (<emph>n</emph> = 2).</p> <hd id="AN0043669025-10">Results</hd> <p>A total of 123 health interview and health examination surveys from 17 European countries were identified for review (Appendix 1). The surveys were conducted between 1986–2005, most (60%) from 2000–2003. They ranged in scope from samples of <emph>n</emph> = 1000 responding to a Eurobarometer survey to a national census with a sample size in excess of 10.2 million respondents.</p> <hd id="AN0043669025-11">Pomona indicators</hd> <p>A manual search of survey items pertaining to the <emph>Pomona</emph> health indicators was completed for 115 surveys: eight were omitted as individual items were unavailable. All but two of the <emph>Pomona</emph> 18 indicators were represented in the surveys: these were challenging behaviour and training for health professionals in disability. Of the remaining indicators, Hospitalization and Contact with Health Professionals was most prevalent, being included in 63% (<emph>n</emph> = 73) of generic surveys. One indicator 'prevalence' was identified in just one survey, the Lithuanian Total Population and Housing Census 2001. This includes an item asking if the respondent had a 'mental' disability; which, according to the expert informant, is the preferred term for intellectual disability in Lithuania.</p> <hd id="AN0043669025-12">Sampling and proxies</hd> <p>A total of 77 surveys provided information regarding sample scope and the use of proxies. Information on the 'inclusion of people from institutions for people with mental handicap' was available for 96 surveys; of which the majority (<emph>n</emph> = 78; 81%) excluded this population from their sampling frame. Of the 77 surveys providing information on the use of proxy respondents, 45% (<emph>n</emph> = 35) employed proxies for 'adults not in the home'; 56% (<emph>n</emph> = 43) for 'adults not able to reply'; and 5% (<emph>n</emph> = 4) for 'institutionalized groups'.</p> <p>The findings related to sample scope and use of proxies suggest that while persons from institutional settings are poorly represented among survey participants, approximately half of the surveys reviewed provide opportunities for proxy respondents for adults who are unable to participate. According to Dr Jean Tafforeau, Scientific Institute of Public Health, Brussels, the presence of intellectual disability is one of many reasons for employing a proxy respondent (pers. comm.). Although people with intellectual disabilities may be represented in surveys that employ proxy respondents, it is not possible to confirm this.</p> <hd id="AN0043669025-13">Representation of people with intellectual disabilities</hd> <p>Survey items classified as 'long‐standing illness, chronic condition, disabilities' were manually reviewed from 92 surveys. A further 31 surveys (25% of the total) were omitted from this search as they did not contain this item. Three types of items dominated; (i) 24 (<emph>n</emph> = 26%) surveys contained a global disability only item; (ii) the majority (<emph>n</emph> = 61; 66%) contained a global disability item with an adjunct item requesting information on type of disability but without reference to intellectual disability; (iii) seven surveys (8%) contained items specifically referencing intellectual disability.</p> <hd id="AN0043669025-14">Global disability only</hd> <p>[<reflink idref="bib12" id="ref56">12</reflink>] provides an example of such an item: 'Do you have any chronic physical or mental health problem, illness or disability?' The response is typically a 'yes, no' dichotomy. No further information is sought regarding the disability.</p> <hd id="AN0043669025-15">Global disability with adjunct item</hd> <p>These surveys included an adjunct item on type of disability but did not refer to intellectual disability: The Swedish Living Conditions Survey ([<reflink idref="bib42" id="ref57">42</reflink>]) provides an example: 'Do you have any long‐term illness, after‐effects from an accident, disability or other weakness? What trouble is that?' The responses to type of disability for these items either excluded intellectual disability or were unspecified.</p> <hd id="AN0043669025-16">Specific items on intellectual disability</hd> <p>Seven surveys (8%) contained items that had potential to identify respondents with intellectual disabilities. These comprised four surveys from France; the <emph>Health & Care Interview Survey</emph> (1996), the <emph>Health and Social Protection Survey</emph> (1998), the <emph>Handicap, Disabilities and Dependency Survey</emph> (1999) and the <emph>INSEE Survey on Handicaps, Disabilities and Dependency</emph> (2001); the Italian <emph>Health Conditions and Use of Health Services</emph> (1999); the <emph>UK Disability Survey</emph> (1997) and <emph>General Household Survey</emph> (2004).</p> <p>Examples of specific items on intellectual disability include 'At what type of establishment is the person resident – special establishment for the mentally retarded?' (From <emph>INSEE</emph> 2001); 'Have you ever suffered invalidity because of mental handicap?' (From <emph>Health Conditions and Use of Health Services,</emph> 1999) and 'Do you have a mental handicap or other severe learning disability?' (From <emph>The Disability Survey</emph> 1997).</p> <p>The named contact persons for each survey were successfully contacted on behalf of 91 surveys, the majority of whom (<emph>n</emph> = 61; 67%) stated that it would not be possible to identify whether survey participants had intellectual disability. A further 28 (31%) respondents stated that while it was possible to identify participants with intellectual disabilities, their numbers would be so small as to warrant any statistical analysis invalid. Data analysis of anonymized datasets was possible for a number of these surveys conducted in the United Kingdom via the Data Archive http://www.data‐archive.ac.uk/ and revealed sample sizes typically ranging from 10–50 participants. A global question on illness/disability was examined for each, and responses for intellectual disability were examined. For example, the Health Survey for England 2000–2001 has a disability variable (code 12 = intellectual disability), and the General Household Survey has an ICD variable (code 5 = intellectual disability). Finally two respondents, on behalf of the <emph>Lithuanian Total Population and Housing Census</emph> (2001) and the <emph>Spanish Impairments, Disabilities & Health Status Survey</emph> (1999), stated that it would be possible to extract an appropriately sized sample of participants with intellectual disabilities and compare their responses with other participants in these surveys.</p> <hd id="AN0043669025-17">Discussion</hd> <p>These findings reveal the relative invisibility of people with intellectual disabilities in current public health monitoring activities in Europe, despite the potential capacity of extant survey instruments to address gaps in information. Of 123 surveys only nine were identified – two by informants and seven by review of item – that have the potential to provide comparable data on the health of respondents with and without intellectual disabilities.</p> <p>Two factors may help to explain why so few surveys currently identify this population. First, many are based on a system using the 'household' as the unit of sampling. As some people with intellectual disabilities do not reside in traditional household settings, it is likely that they would be excluded from such surveys. Second, difficulties arose in identifying respondents specifically with intellectual disabilities among participants. Generally 'filter' questions were employed to determine whether any person in the household 'has a disability/long term condition'. Whether such questions accurately identify people with disability is a topic currently being addressed by the UN's Washington Group on Disability Statistics (<ulink href="http://www.cdc.gov/nchs/citygroup.htm">http://www.cdc.gov/nchs/citygroup.htm</ulink>). In addition, filter questions may prohibit the possibility of extracting data on respondents with specific disabilities as they typically ask if the respondent has a long‐term chronic condition without specifying the nature of the condition.</p> <p>The review of health surveys undertaken in the present study did not attempt to identify data sources to return prevalence figures: rather, it aimed to determine (<reflink idref="bib1" id="ref58">1</reflink>) whether a variable on long‐term conditions or disability was included on an existing survey that might permit the identification of people with intellectual disabilities; and (<reflink idref="bib2" id="ref59">2</reflink>) whether contact persons named on the respective websites could identify whether data on this group could be extracted. All surveys on the HIS and HES database were scrutinized for a variable that would identify people with intellectual disabilities: surveys included both adults and children. It remains to be seen whether future strategies for gathering health survey data at regional level will specifically include children, despite the well‐documented challenges of ascertaining the presence of intellectual disabilities among young children, particularly those of pre‐school age. Further, substantial efforts will be required to accomplish the valuable but daunting task of determining the prevalence of intellectual disabilities in Europe.</p> <p>Those who plan the inclusion of people with intellectual disabilities in a future generic survey must consider how best to secure their appropriate representation. However, this step is beyond the scope of the present study, which aimed to determine whether people with intellectual disabilities are visible in existing generic health surveys, and not to estimate the prevalence of intellectual disabilities nor propose detailed sampling strategies.</p> <p>Reliance on proxy respondents is expected when surveying the health of respondents who have intellectual disabilities. Experts in the field will doubtless strive to apply other valid methodologies, perhaps qualitative or interview, in surveys to ensure that health information may be gathered directly from all respondents with intellectual disabilities. The use of proxy respondents is considered a valid method for data collection in all HIS and HES for a range of respondent groups. Respondent categories include: 'for children', 'for adults not at home', 'for adults not able to reply', 'for persons belonging to an institutionalized group', 'no proxies' and 'no information available'.</p> <p>Caution should guide any comparison of data across 17 countries that are very diverse in culture, especially in their traditions of providing support to people with intellectual disabilities. First, terms such as 'mental disorder' and 'mental disability' differ in meaning in the countries surveyed. Second, the review reflects only current entries on the HIS HES database. For example, the Lithuanian survey scrutinized in this study was a total population survey. Subsequently, the HIS and HES database has changed as time of writing and the fields for population size and much information previously presented are empty for Lithuania and Spain. Finally, unless systems like the UK Data Archive become commonplace it is likely that useful data already collected will remain inaccessible.</p> <p>Despite such challenges, current HIS and HES surveys may provide an opportunity for the collection of comparable health data on both the general population and those with intellectual disabilities. Further investigation is planned as an activity within <emph>Pomona</emph> II given the continual updating of survey instruments on the HIS and HES database.</p> <p>Why might national governments and the European Community include people with disabilities with generic health surveys? According to the UN Standard Rules on the Equalization of Opportunities for Persons with Disabilities ([<reflink idref="bib45" id="ref60">45</reflink>]), States...</p> <p>...assume the ultimate responsibility for the collection and dissemination of information on the living conditions of persons with disabilities and promote comprehensive research on all aspects, including obstacles that affect the lives of persons with disabilities (Rule 13).</p> <p>In addition, the UN Rules advocate the establishment of databanks on disability to highlight the availability of services and the prevalence of specific disabilities. Article 25(a) of the UN Convention on the Rights of Persons with Disabilities ([<reflink idref="bib46" id="ref61">46</reflink>]) specifically directs States Parties to.</p> <p>...Provide persons with disabilities with the same range, quality and standard of free or affordable health care and programmes as provided to other persons, including in the area of sexual and reproductive health and population‐based public health programmes.</p> <p>Arguably, individuals with intellectual disabilities themselves may question the benefit of presenting themselves as members of a group often stigmatized if there is no likely return in terms of their improved health or social status.</p> <p>Co‐ordinated efforts at country and Community levels to embed regular data gathering on the health of people with intellectual disabilities must continue as a matter of priority to diminish inequities and to advance the well‐being and social inclusion of citizens in this group. While reliable, systematic sources of population‐based health data are necessary to address health disparities, even these will not suffice in the absence of well‐founded political decisions. As [<reflink idref="bib48" id="ref62">48</reflink>] concludes in her critical appraisal of the interwoven duties of policy and research:</p> <p>Neither the question of what inequity is, i.e., what is avoidable, unnecessary, and unjust, nor the question as to what extent inequities are problems that need to be dealt with can be solved by more research alone, the answer will always also depend on the political and philosophical standpoint of the observer (p. 616).</p> <p>For the first time, this report presents evidence about the absence of people with intellectual disabilities from European health monitoring systems. It is a first step in informing policy‐makers charged with responsibility for monitoring health of all citizens, that there are potentially crucial gaps in information about the health of those who may not readily speak on their own behalf.</p> <hd id="AN0043669025-18">Acknowledgments</hd> <p>Partners in <emph>Pomona</emph> I and <emph>Pomona</emph> II: Germain Weber, University of Vienna, Austria; Geert van Hove, University of Ghent; Belgium; Frank Ulmer Jorgensen, Landsforeningen LEV, Denmark; Tuomo Määttä, Service Centre of Kuysanmaki, Finland; Charles Aussilloux, Service de Medecine Psychologique Enfants et Adolescents, Peyre Plantade, CHU, Montpellier & Bernard Azema, CREAI, Languedoc Roussillon, France; Meindert Haveman, University of Dortmund, Germany; Patricia Noonan Walsh & Christine Linehan, UCD Centre for Disability Studies, University College Dublin, Ireland; Serafino Buono, IRCCS Oasi Maria SS, Troina, Italy; Dr Arunas Germanavicius, Vilnius University, Lithuania; Raymond Ceccotto, Fondation Association des Parents D'enfants Mentalement Handicapes, Luxembourg; H.M.J. van Schrojenstein Lantman‐de Valk, University of Maastricht, the Netherlands; Dr Jan Tossebro, Norwegian University of Science and Technology Norway; Dr Alexandra Carmen Cara, Sc Medfam Apolo Srl, Romania; Dr Daŝa Moravec Berger, Institute of Public Health of the Republic of Slovenia; Luis Salvador‐Carulla, University of Cadiz, Spain; Monica Björkman, Landstingets Hjarnskadecenter, Uppsala, Sweden; M.P. Kerr, Welsh Centre for Learning Disabilities, Cardiff University, Wales, UK.</p> <p>DG‐Public Health and Consumer Protection – Public Health/Health Information supported <emph>Pomona</emph> I (2002/203496‐00) and <emph>Pomona</emph> II (2004130). The opinions expressed in this article do not necessarily reflect those of the European Commission DG Public Health.</p> <hd id="AN0043669025-19">Correspondence</hd> <p>Any correspondence should be directed to Christine Linehan, Centre for Disability Studies, School of Psychology, Geary Institute B‐207D002, Newman Building, UCD, Belfield, Dublin 4, Ireland (e‐mail: christine.linehan@ucd.ie).</p> <hd id="AN0043669025-20">Appendix</hd> <p></p> <hd id="AN0043669025-21">Appendix 1</hd> <p>List of 123 surveys examined for inclusion of participants with intellectual disabilities</p> <p></p> <p> <ephtml> <table><tbody valign="top"><tr><td>1</td><td>Austria (4)</td><td>1995</td><td>Disabled Persons 1995</td></tr><tr><td>2</td><td>Austria (4)</td><td>1997</td><td>Sports, Leisure, Time, Home Accidents & Smoking Habits 1997</td></tr><tr><td>3</td><td>Austria (4)</td><td>1999</td><td>Health Interview Survey 1999</td></tr><tr><td>4</td><td>Austria (4)</td><td>2002</td><td>Labour Force Survey Ad Hoc Module on Employment of Disabled People 2002</td></tr><tr><td>5</td><td>Belgium (4)</td><td>1997</td><td>Health Interview Survey 1997</td></tr><tr><td>6</td><td>Belgium (4)</td><td>2001</td><td>Health Interview Survey 2001</td></tr><tr><td>7</td><td>Belgium (4)</td><td>2004</td><td>Health Interview Survey 2004</td></tr><tr><td>8</td><td>Belgium (4)</td><td>2001</td><td>General SocioEconomic Survey 2001</td></tr><tr><td>9</td><td>Denmark (2)</td><td>1994</td><td>Danish Health & Morbidity 1994</td></tr><tr><td>10</td><td>Denmark (2)</td><td>2000</td><td>Health & Morbidity in Denmark 2000</td></tr><tr><td>11</td><td>Finland (17)</td><td>1986</td><td>Living Conditions Survey 1986</td></tr><tr><td>12</td><td>Finland (17)</td><td>1996</td><td>Finnish Health Care Survey 1996</td></tr><tr><td>13</td><td>Finland (17)</td><td>1997</td><td>FinRisk Survey 1997</td></tr><tr><td>14</td><td>Finland (17)</td><td>2002</td><td>FinRisk Survey 2002</td></tr><tr><td>15</td><td>Finland (17)</td><td>1997</td><td>FinRisk Examination 1997</td></tr><tr><td>16</td><td>Finland (17)</td><td>2002</td><td>FinRisk Examination 2002</td></tr><tr><td>17</td><td>Finland (17)</td><td>2000</td><td>Health 2000</td></tr><tr><td>18</td><td>Finland (17)</td><td>2000</td><td>Health 2000 Examination</td></tr><tr><td>19</td><td>Finland (17)</td><td>2000</td><td>Survey on Health Behaviour 2000</td></tr><tr><td>20</td><td>Finland (17)</td><td>2001</td><td>The European Community Household Panel Survey 2001</td></tr><tr><td>21</td><td>Finland (17)</td><td>2001</td><td>Health Behaviour Among the Finnish Elderly Population 2001</td></tr><tr><td>22</td><td>Finland (17)</td><td>2003</td><td>Health Behaviour Among the Finnish Elderly Population 2003</td></tr><tr><td>23</td><td>Finland (17)</td><td>2001</td><td>Health Behaviour Among the Finnish Adult Population 2001</td></tr><tr><td>24</td><td>Finland (17)</td><td>2002</td><td>Health Behaviour Among the Finnish Adult Population 2002</td></tr><tr><td>25</td><td>Finland (17)</td><td>2003</td><td>Health Behaviour Among the Finnish Adult Population 2003</td></tr><tr><td>26</td><td>Finland (17)</td><td>2004</td><td>Health Behaviour Among the Finnish Adult Population 2004</td></tr><tr><td>27</td><td>Finland (17)</td><td>2005</td><td>Health Behaviour Among the Finnish Adult Population 2005</td></tr><tr><td>28</td><td>France (15)</td><td>1996</td><td>Health and Care Interview Survey 1996</td></tr><tr><td>29</td><td>France (15)</td><td>2002</td><td>Health and Care Interview 2002</td></tr><tr><td>30</td><td>France (15)</td><td>1998</td><td>Health and Social Protection 1998</td></tr><tr><td>31</td><td>France (15)</td><td>1999</td><td>Handicap, Disabilities and Dependency Survey 1999</td></tr><tr><td>32</td><td>France (15)</td><td>2001</td><td>The INSEE Survey on Handicaps, Disabilities and Dependency 2001</td></tr><tr><td>33</td><td>France (15)</td><td>1999</td><td>Health Barometer 1999</td></tr><tr><td>34</td><td>France (15)</td><td>2004</td><td>Health Barometer 2004</td></tr><tr><td>35</td><td>France (15)</td><td>1999</td><td>French Survey on Living Conditions & Aspirations 1999</td></tr><tr><td>36</td><td>France (15)</td><td>2001</td><td>French Survey on Living Conditions & Aspirations 2001</td></tr><tr><td>37</td><td>France (15)</td><td>2002</td><td>French Survey on Living Conditions & Aspirations 2002</td></tr><tr><td>38</td><td>France (15)</td><td>2003</td><td>French Survey on Living Conditions & Aspirations 2003</td></tr><tr><td>39</td><td>France (15)</td><td>2004</td><td>French Survey on Living Conditions & Aspirations 2004</td></tr><tr><td>40</td><td>France (15)</td><td>2000</td><td>Continuous Survey on Households Living Conditions 2000</td></tr><tr><td>41</td><td>France (15)</td><td>2001</td><td>Survey on Households Living Conditions 2001</td></tr><tr><td>42</td><td>France (15)</td><td>2002</td><td>National Survey on Health & National Health Insurance (ESPS) 2002</td></tr><tr><td>43</td><td>Germany (6)</td><td>1998</td><td>Survey on Living Conditions, Health and Environment 1998</td></tr><tr><td>44</td><td>Germany (6)</td><td>1998</td><td>German National Health Examination and Interview Survey 1998 HIS</td></tr><tr><td>45</td><td>Germany (6)</td><td>1998</td><td>German National Health Interview and Examination Survey 1998 HES</td></tr><tr><td>46</td><td>Germany (6)</td><td>1999</td><td>Questions on Health 1999</td></tr><tr><td>47</td><td>Germany (6)</td><td>2003</td><td>Questions on Health – Microcensus 2003</td></tr><tr><td>48</td><td>Germany (6)</td><td>2003</td><td>KiGGS ‐ The German Health Survey for Children and Adolescents 2003</td></tr><tr><td>49</td><td>Ireland (10)</td><td>1998</td><td>Survey of Lifestyle, Attitudes and Nutrition (SLAN) 1998</td></tr><tr><td>50</td><td>Ireland (10)</td><td>1998</td><td>Survey of Lifestyle, Attitudes and Nutrition (SLAN) 1998 (HES)</td></tr><tr><td>51</td><td>Ireland (10)</td><td>2000</td><td>Living in Ireland Survey 2000</td></tr><tr><td>52</td><td>Ireland (10)</td><td>2001</td><td>Living in Ireland Survey 2001</td></tr><tr><td>53</td><td>Ireland (10)</td><td>2002</td><td>Survey of Lifestyle, Attitudes and Nutrition (SLAN) 2002</td></tr><tr><td>54</td><td>Ireland (10)</td><td>2002</td><td>Survey of Lifestyle, Attitudes and Nutrition (SLAN) 2002 (HES)</td></tr><tr><td>55</td><td>Ireland (10)</td><td>2001</td><td>Health Module Q3 2001</td></tr><tr><td>56</td><td>Ireland (10)</td><td>2002</td><td>Disability Module Q2 2002</td></tr><tr><td>57</td><td>Ireland (10)</td><td>2002</td><td>Census of Population 2002</td></tr><tr><td>58</td><td>Ireland (10)</td><td>2004</td><td>Disability Module Update Q1 2004</td></tr><tr><td>59</td><td>Italy (6)</td><td>1994</td><td>Aspects of Daily Life 1994</td></tr><tr><td>60</td><td>Italy (6)</td><td>2000</td><td>Aspects of Daily Living 2000</td></tr><tr><td>61</td><td>Italy (6)</td><td>2001</td><td>Aspects of Daily Living 2001</td></tr><tr><td>62</td><td>Italy (6)</td><td>2002</td><td>Aspects of Daily Living 2002</td></tr><tr><td>63</td><td>Italy (6)</td><td>2003</td><td>Aspects of Daily Living 2003</td></tr><tr><td>64</td><td>Italy (6)</td><td>1999</td><td>Health Conditions and the Use of Health Services 1999</td></tr><tr><td>65</td><td>Lithuania (4)</td><td>1998</td><td>Living Conditions Survey 1998</td></tr><tr><td>66</td><td>Lithuania (4)</td><td>2001</td><td>Total Population and Housing Census 2001</td></tr><tr><td>67</td><td>Lithuania (4)</td><td>2002</td><td>Lithuanian Health Behaviour Monitoring 2002</td></tr><tr><td>68</td><td>Lithuania (4)</td><td>2002</td><td>Labour Force Survey 2002</td></tr><tr><td>69</td><td>Luxembourg (8)</td><td>1996</td><td>Eurobarometer 1996</td></tr><tr><td>70</td><td>Luxembourg (8)</td><td>2000</td><td>Eurobarometer EB 41.0 2000</td></tr><tr><td>71</td><td>Luxembourg (8)</td><td>2002</td><td>Eurobarometer October 2002</td></tr><tr><td>72</td><td>Luxembourg (8)</td><td>1996</td><td>Panel Living in Luxembourg 1996</td></tr><tr><td>73</td><td>Luxembourg (8)</td><td>2000</td><td>European Community Household Panel 2000</td></tr><tr><td>74</td><td>Luxembourg (8)</td><td>2001</td><td>European Community Household Panel 2001</td></tr><tr><td>75</td><td>Luxembourg (8)</td><td>2001</td><td>Socio‐Economic Panel Living in Luxembourg 2001</td></tr><tr><td>76</td><td>Luxembourg (8)</td><td>2002</td><td>2002 LFS Ad Hoc Module Employment of Disabled People 2002</td></tr><tr><td>77</td><td>Netherlands (5)</td><td>1998</td><td>Continuous Quality of Life 1998</td></tr><tr><td>78</td><td>Netherlands (5)</td><td>2001</td><td>Continuous Quality of Life 2001</td></tr><tr><td>79</td><td>Netherlands (5)</td><td>2001</td><td>Patient Survey ‐ 2nd Dutch National Survey of General Practice 2001</td></tr><tr><td>80</td><td>Netherlands (5)</td><td>2001</td><td>Netherlands HES 2001</td></tr><tr><td>81</td><td>Netherlands (5)</td><td>2003</td><td>Food Consumption Survey 2003</td></tr><tr><td>82</td><td>Norway (4)</td><td>1998</td><td>Survey on Living Conditions 1998</td></tr><tr><td>83</td><td>Norway (4)</td><td>2001</td><td>Population and housing census 2001</td></tr><tr><td>84</td><td>Norway (4)</td><td>2002</td><td>Survey on living conditions & health, care and social relations 2002</td></tr><tr><td>85</td><td>Norway (4)</td><td>2002</td><td>Cohort Norway 2002</td></tr><tr><td>86</td><td>Romania (1)</td><td>2000</td><td>Health Interview Survey 2000</td></tr><tr><td>87</td><td>Slovenia (2)</td><td>2001</td><td>Slovenian Public Health Opinion SJM01/3 2001</td></tr><tr><td>88</td><td>Slovenia (2)</td><td>2001</td><td>CINDI Health Monitor Questionnaire 2001</td></tr><tr><td>89</td><td>Spain (5)</td><td>1995</td><td>National Health Survey 1995</td></tr><tr><td>90</td><td>Spain (5)</td><td>2001</td><td>National Health Survey 2001</td></tr><tr><td>91</td><td>Spain (5)</td><td>2003</td><td>National Health Survey 2003</td></tr><tr><td>92</td><td>Spain (5)</td><td>1999</td><td>Impairments, Disabilities & Health Status Survey 1999</td></tr><tr><td>93</td><td>Spain (5)</td><td>1996</td><td>Catalan Chronic Diseases Survey 1996</td></tr><tr><td>94</td><td>Sweden (4)</td><td>1999</td><td>Living Conditions Survey 1999</td></tr><tr><td>95</td><td>Sweden (4)</td><td>2001</td><td>Living Conditions Survey 2001</td></tr><tr><td>96</td><td>Sweden (4)</td><td>2003</td><td>Living Conditions Survey 2003</td></tr><tr><td>97</td><td>Sweden (4)</td><td>2004</td><td>Survey of Living Conditions 2004</td></tr><tr><td>98</td><td>United Kingdom (26)</td><td>1992</td><td>Health & Lifestyle Survey 1992</td></tr><tr><td>99</td><td>United Kingdom (26)</td><td>1993</td><td>Survey of Psychiatric Morbidity 1993</td></tr><tr><td>100</td><td>United Kingdom (26)</td><td>1995</td><td>The Scottish Health Survey 1995</td></tr><tr><td>101</td><td>United Kingdom (26)</td><td>1995</td><td>Scottish Health Survey (HES) 1995</td></tr><tr><td>102</td><td>United Kingdom (26)</td><td>1998</td><td>The Scottish Health Survey 1998</td></tr><tr><td>103</td><td>United Kingdom (26)</td><td>1998</td><td>The Scottish Health Survey (HES) 1998</td></tr><tr><td>104</td><td>United Kingdom (26)</td><td>2003</td><td>Scottish Health Survey (HES) 2003</td></tr><tr><td>105</td><td>United Kingdom (26)</td><td>1997</td><td>Disability Survey 1997</td></tr><tr><td>106</td><td>United Kingdom (26)</td><td>1998</td><td>Health Education Monitoring Survey 1998</td></tr><tr><td>107</td><td>United Kingdom (26)</td><td>1998</td><td>Health Survey for England 1998</td></tr><tr><td>108</td><td>United Kingdom (26)</td><td>1998</td><td>Health Survey for England Examination 1998</td></tr><tr><td>109</td><td>United Kingdom (26)</td><td>1999</td><td>Health Survey for England (HES) 1999</td></tr><tr><td>110</td><td>United Kingdom (26)</td><td>2000</td><td>Health Survey for England 2000</td></tr><tr><td>111</td><td>United Kingdom (26)</td><td>2000</td><td>Health Survey for England (HES) 2000</td></tr><tr><td>112</td><td>United Kingdom (26)</td><td>2001</td><td>Health Survey for England 2001</td></tr><tr><td>113</td><td>United Kingdom (26)</td><td>2001</td><td>Health Survey for England (HES) 2001</td></tr><tr><td>114</td><td>United Kingdom (26)</td><td>2002</td><td>Health Survey for England (HES) 2002</td></tr><tr><td>115</td><td>United Kingdom (26)</td><td>2003</td><td>Health Survey for England (HES) 2003</td></tr><tr><td>116</td><td>United Kingdom (26)</td><td>2004</td><td>Health Survey for England (HES) 2004 (1) ‐ the health of minority ethnic groups</td></tr><tr><td>117</td><td>United Kingdom (26)</td><td>2004</td><td>Health Survey for England (HES) 2004 (2)</td></tr><tr><td>118</td><td>United Kingdom (26)</td><td>2000</td><td>General Household Survey 2000</td></tr><tr><td>119</td><td>United Kingdom (26)</td><td>2001</td><td>The General Household Survey 2001</td></tr><tr><td>120</td><td>United Kingdom (26)</td><td>2002</td><td>General Household Survey 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  Data: Are People with Intellectual Disabilities Represented in European Public Health Surveys?
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  Data: <searchLink fieldCode="AR" term="%22Linehan%2C+Christine%22">Linehan, Christine</searchLink><br /><searchLink fieldCode="AR" term="%22Walsh%2C+P%2E+N%2E%22">Walsh, P. N.</searchLink><br /><searchLink fieldCode="AR" term="%22Van+Schrojenstein+Lantman-de+Valk%2C+H%2E+M%2E+J%2E%22">Van Schrojenstein Lantman-de Valk, H. M. J.</searchLink><br /><searchLink fieldCode="AR" term="%22Kerr%2C+M%2E+P%2E%22">Kerr, M. P.</searchLink><br /><searchLink fieldCode="AR" term="%22Dawson%2C+Frances%22">Dawson, Frances</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Sep 2009 22(5):409-420.
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  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
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  Data: 12
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  Data: 2009
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  Data: Journal Articles<br />Reports - Evaluative
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  Data: <searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Public+Health%22">Public Health</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22National+Surveys%22">National Surveys</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Interviews%22">Interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Sampling%22">Sampling</searchLink><br /><searchLink fieldCode="DE" term="%22Data+Collection%22">Data Collection</searchLink>
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  Data: 10.1111/j.1468-3148.2009.00521.x
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  Data: 1360-2322
– Name: Abstract
  Label: Abstract
  Group: Ab
  Data: 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.
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