The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities
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| Title: | The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities |
|---|---|
| Language: | English |
| Authors: | Ouellette-Kuntz, H., Cobigo, V., Balogh, R., Wilton, A., Lunsky, Y. |
| Source: | Journal of Applied Research in Intellectual Disabilities. Jan 2015 28(1):43-54. |
| 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: | 2015 |
| Document Type: | Journal Articles Reports - Research |
| Descriptors: | Developmental Disabilities, Mental Retardation, Prevention, Adults, Early Intervention, Guidelines, Prereferral Intervention, Screening Tests, Age Differences, Gender Differences, Cancer, Primary Health Care, Access to Health Care, Change Strategies, Delivery Systems, Foreign Countries, Health Services, Health Conditions |
| Geographic Terms: | Canada |
| DOI: | 10.1111/jar.12133 |
| ISSN: | 1360-2322 |
| Abstract: | Background: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. Methods: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. Results: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two-year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender-specific screening for the three types of cancer studied (colorectal, breast and cervical). Conclusions: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted. |
| Abstractor: | As Provided |
| Entry Date: | 2014 |
| Accession Number: | EJ1048408 |
| Database: | ERIC |
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| FullText | Links: – Type: pdflink Url: https://content.ebscohost.com/cds/retrieve?content=AQICAHj0k_4E0hTGH8RJwT4gCJyBsGNe_WN95AvKlDbXJGqwxwFhFjS6YM0vjBZ_wP6lzCbwAAAA4jCB3wYJKoZIhvcNAQcGoIHRMIHOAgEAMIHIBgkqhkiG9w0BBwEwHgYJYIZIAWUDBAEuMBEEDDGsDUpwsd2h8XWdsgIBEICBmib5uX_Esb0DJ0KSsmQjI8tPALfH4uZ-zTkdmb0brEFQFrxF3CFNNJKJbsOmcOzyHOl3lgS_3nCJ_wgo0ejihk3jOuEk9x6B7O8xcaPWNN4D7GtzeR0Vhk5IRa24s6RnFNAhq470KJDgHzJsdT4YDjlyPsE1sP7hZM6hFNGrWg8a6ohXZTp8KepCrKfZxZyOtrfplFZAkEVw9Rg= Text: Availability: 1 Value: <anid>AN0102206062;e0301jan.15;2018Jul09.15:20;v2.2.500</anid> <title id="AN0102206062-1">The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities. </title> <p>Background: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. Methods: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. Results: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two‐year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender‐specific screening for the three types of cancer studied (colorectal, breast and cervical). Conclusions: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted.</p> <p>disparities; prevention; cancer</p> <p>Secondary prevention involves the early detection of disease while it is asymptomatic and before it progresses; it includes regular health checks and cancer screening. It is part of a comprehensive approach to preventive health care that has been promoted in primary care. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize early signs and symptoms of disease. When comprehensive assessments are undertaken, they often reveal high rates of concurrent treatable conditions (Beange et al. [<reflink idref="bib2" id="ref1">2</reflink>] ; Lennox et al. [<reflink idref="bib30" id="ref2">30</reflink>] ). There is evidence that adults with intellectual disabilities experience most health‐related problems at similar or higher rates than the general population (Evenhuis et al. [<reflink idref="bib13" id="ref3">13</reflink>] ; World Health Organization [<reflink idref="bib65" id="ref4">65</reflink>] ), they should therefore receive at least the same array of secondary prevention services. Yet, in general, health screening for persons with intellectual and developmental disabilities requires significant improvements (Lewis et al. [<reflink idref="bib32" id="ref5">32</reflink>] ). A New Zealand study found that prevention activities such as regular health checks and cancer screening were among the most common unmet healthcare needs in adults with intellectual disabilities (Webb &amp; Rogers [<reflink idref="bib60" id="ref6">60</reflink>] ).</p> <p>The limited uptake of secondary prevention programmes does not result simply from a choice on the part of adults with intellectual and developmental disabilities. Known barriers to uptake such as lower education and income, lack of awareness and skills, and physical limitations make adults with intellectual and developmental disabilities particularly vulnerable to experiencing gaps in preventive care. An important barrier to screening is the challenge of seeking valid consent from individuals with intellectual disabilities (Kirby &amp; Hegarty [<reflink idref="bib27" id="ref7">27</reflink>] ). Additionally, women with intellectual and developmental disabilities report a lack of knowledge of breast and cervical cancer screening and that fear and embarrassment prevent them from accessing these programmes (Truesdale‐Kennedy et al. [<reflink idref="bib57" id="ref8">57</reflink>] ; Wilkinson et al. [<reflink idref="bib61" id="ref9">61</reflink>] ; Parish et al. [<reflink idref="bib42" id="ref10">42</reflink>] ,[<reflink idref="bib43" id="ref11">43</reflink>] ).</p> <p>For individuals with intellectual and developmental disabilities who rely on caregivers to assist in such activities, the caregivers' attitudes, knowledge and skills further influence the decision to participate in secondary prevention activities. Knowledge and attitudes of primary care providers also contribute to low uptake (Kerr et al. [<reflink idref="bib26" id="ref12">26</reflink>] ; Lennox et al. [<reflink idref="bib29" id="ref13">29</reflink>] ; U.S. Department of Health &amp; Human Services [<reflink idref="bib59" id="ref14">59</reflink>] ).</p> <p>Recognizing the need to raise awareness and improve practice of primary care providers in Canada, Sullivan et al. ([<reflink idref="bib54" id="ref15">54</reflink>] ) have published and promoted consensus guidelines for the primary health care of adults with intellectual and developmental disabilities. With regard to secondary prevention, these guidelines highlight the need to apply general guidelines in periodic health examination checks for average‐risk adults in the general population. These focus on the early detection of cancer, osteoporosis, diabetes, hearing impairment, cardiovascular disease and sexually transmitted infections (Dubey &amp; Glazier [<reflink idref="bib12" id="ref16">12</reflink>] ). Sullivan et al. ([<reflink idref="bib54" id="ref17">54</reflink>] ) draw attention to additional or enhanced secondary prevention guidelines specific to the care of adults with intellectual and developmental disabilities. The additional guidelines relate to the early detection of neglect and abuse, visual impairment, thyroid disease, dysphagia, aspiration, gastroesophageal reflux disease, constipation and H. pylori infection. Enhanced guidelines relate to earlier and targeted screening for hearing impairment and osteoporosis.</p> <p>In this study, the present authors explore the extent to which the primary care received by adults with intellectual and developmental disabilities in the province of Ontario, Canada, corresponds to four secondary prevention guidelines. The selected guidelines relate to the periodic health examination and early detection of colorectal, breast and cervical cancer or precancerous lesions (see Table [NaN] ). The article also examines disparities in secondary prevention related to these guidelines for adults with intellectual and developmental disabilities compared to those without intellectual and developmental disabilities in the province. The four secondary prevention guidelines were chosen because of their importance and the ability to measure them with the available data.</p> <p>Four selected secondary prevention recommendations/indicators</p> <p> <ephtml> &lt;table&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="left"&gt;Recommendation/indicator&lt;/th&gt;&lt;th align="left"&gt;Source of recommendation/indicator&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Periodic health examination&lt;/td&gt;&lt;td align="left"&gt;Primary healthcare providers should consult&amp;#x2026;more general guidelines in periodic health examination checklists for average&amp;#x2010;risk adults in the general population.&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Sullivan, WF, Heng, J, Cameron D et&amp;#xa0;al. Consensus guidelines for primary health care of adults with developmental disabilities. Canadian Family Physician. 2006; 52(11): 1410&amp;#x2010;8. Accessed 18 September 2013 at hppt://.&lt;/p&gt;&lt;p&gt;In effect during the period of study; updated in 2011.&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Colorectal cancer&lt;/td&gt;&lt;td align="left"&gt;Up&amp;#x2010;to&amp;#x2010;date with colorectal tests, defined as one of the following: FOBT in the previous two&amp;#x2010;year period; sigmoidoscopy in the previous five&amp;#x2010;year period; or colonoscopy in the previous ten&amp;#x2010;year period.&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Cancer Care Ontario. ColonCancerCheck 2010 Programme Report. Toronto, ON: CCO; 2012. Accessed 12 September 2013 at .&lt;/p&gt;&lt;p&gt;Recommended indicator in 2010.&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Breast cancer&lt;/td&gt;&lt;td align="left"&gt;Mammogram every two years for women 50 to 74&amp;#xa0;years of age.&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Cancer Care Ontario. Mammograms. Accessed 12 September 2013 at .&lt;/p&gt;&lt;p&gt;In effect from 1990 onward as part of the Ontario breast screening programme.&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Cervical cancer&lt;/td&gt;&lt;td align="left"&gt;Pap test within three years of initiation of vaginal sexual activity and annually until three negative tests, then every two to three years to age 70.&lt;/td&gt;&lt;td align="left"&gt;&lt;p&gt;Morrison, B.J. Screening for cervical cancer. In: Canadian Task Force on Periodic Health Examination. The Canadian Guide to Clinical Preventive Health Care. Ottawa, ON: Minister of Public Works and Government Services Canada; 1994. P. 883&amp;#x2010;9. Accessed November 11, 2013 at hppt://canadiantaskforce.ca/wp&amp;#x2010;content/uploads/2013/03/Chapter73&amp;#95;cervicalca94.pdf.&lt;/p&gt;&lt;p&gt;In effect during the period of study; updated in 2012.&lt;/p&gt;&lt;/td&gt;&lt;/tr&gt;&lt;/table&gt; </ephtml> </p> <hd id="AN0102206062-2">The periodic health examination</hd> <p>The periodic health examination – also known as the annual health exam – provides an opportunity for primary care providers to ensure preventive care, and earlier disease detection is regularly undertaken. It includes a ‘head to toe’ examination, discussion of health behaviours, immunization updates and screening tests. It is the time where health issues that are not addressed during other appointments are discussed.</p> <p>Although there continues to be debate in Canada and elsewhere about the utility of the periodic health examination for all patients (Howard‐Tripp [<reflink idref="bib23" id="ref18">23</reflink>] ,[<reflink idref="bib24" id="ref19">24</reflink>] ; Mavriplis [<reflink idref="bib37" id="ref20">37</reflink>] ,[<reflink idref="bib38" id="ref21">38</reflink>] ; Krogsbøll et al. [<reflink idref="bib28" id="ref22">28</reflink>] ), the evidence specific to adults with intellectual and developmental disabilities suggests that without a dedicated approach to health assessment, inadequate care will result (Ouellette‐Kuntz [<reflink idref="bib41" id="ref23">41</reflink>] ). A 2006 Welsh study revealed the ability of the health check to identify previously undiagnosed health problems among adults with intellectual and developmental disabilities (Baxter et al. [<reflink idref="bib1" id="ref24">1</reflink>] ). Subsequently, a cluster randomized trial in Australia demonstrated that structured comprehensive health assessments in adults with intellectual and developmental disabilities led to the early identification of health issues and prevention of more complex difficulties (Lennox et al. [<reflink idref="bib30" id="ref25">30</reflink>] ). A more recent study conducted in Scotland demonstrated that these health exams were inexpensive and had lower associated caregiver costs in the year following than caregiver costs for those receiving usual care (Romeo et al. [<reflink idref="bib49" id="ref26">49</reflink>] ). Furthermore, although not yet demonstrated, the periodic health examination in adults with intellectual and developmental disabilities may have important benefits similar to those found among older adults such as reduced hospitalization and long‐term care admissions (Beswick et al. [<reflink idref="bib4" id="ref27">4</reflink>] ).</p> <hd id="AN0102206062-3">Cancer screening</hd> <p>As the life expectancy of individuals with intellectual and developmental disabilities increases (Patja et al. [<reflink idref="bib44" id="ref28">44</reflink>] ), suboptimal screening practices may contribute to a greater cancer burden in this population (Tyler et al. [<reflink idref="bib58" id="ref29">58</reflink>] ). Adults with intellectual and developmental disabilities are particularly vulnerable to inequitable access to cancer screening; they tend to be poorer, have limited literacy and communication skills and often do not understand the procedure and its benefits (Willis et al. [<reflink idref="bib62" id="ref30">62</reflink>] ; Wilkinson et al. [<reflink idref="bib61" id="ref31">61</reflink>] ).</p> <p>Colorectal cancer is the third most common cancer diagnosed in Canada, the second leading cause of cancer deaths among Canadian men and the third leading cause among Canadian women (Steering Committee on Cancer Statistics [<reflink idref="bib51" id="ref32">51</reflink>] ). A study that linked records for 9409 individuals with intellectual and developmental disabilities to the Western Australian Cancer Registry found that women with intellectual and developmental disabilities had an increased risk of colorectal cancer compared to their general population counterparts (Sullivan et al. [<reflink idref="bib53" id="ref33">53</reflink>] ).</p> <p>Removal of adenomatous polyps, the precursor lesion for most colorectal cancers (Javanparast et al. [<reflink idref="bib25" id="ref34">25</reflink>] ), has been shown to reduce cancer incidence by 76–90% (Winawer et al. [<reflink idref="bib63" id="ref35">63</reflink>] ). Effective population‐based screening therefore provides the opportunity to greatly reduce colorectal cancer morbidity and mortality.</p> <p>The most common colorectal cancer screening procedures (the faecal occult blood test (FOBT) and the colonoscopy) rely on at‐home preparation to ensure the quality of the screening test. The FOBT requires dietary restrictions while the colonoscopy requires complete cleansing of the colon (using stimulants and osmotic agents). Furthermore, the FOBT requires at‐home specimen collection. The latter involves obtaining two specimens each from three separate stools. One study reported inadequate preparation in 45.6% of adults with intellectual and developmental disabilities presenting for colonoscopy (Fisher et al. [<reflink idref="bib15" id="ref36">15</reflink>] ).</p> <p>While the use of colonoscopy might appear to be more appropriate for use in groups where disabilities might make the FOBT specimen collection challenging, it is important to recognize that the colonoscopy is not without risk. The preparation poses a risk to individuals who are unable to consume at least 3 L of clear liquids per day, and individuals with digestive motility disorders, constipation and seizures –all comorbidities commonly seen in adults with intellectual and developmental disabilities (Fisher et al. [<reflink idref="bib15" id="ref37">15</reflink>] ). The colonoscopy itself also carries small risks of complications, such as perforation of the intestine, bleeding and incontinence. In adults with intellectual and developmental disabilities, there are also added risks associated with sedation as deeper sedation may be needed to ensure successful completion of the screening test.</p> <p>Breast cancer is the most common cancer diagnosed in women in Canada. It represents 26.1% of new cancer cases in women and ranking second among cancer causes of death among women. (Steering Committee on Cancer Statistics [<reflink idref="bib51" id="ref38">51</reflink>] ).</p> <p>Several studies have reported that participation in breast cancer screening programmes is lower among women with intellectual and developmental disabilities compared to women without such disabilities (Sullivan et al. [<reflink idref="bib52" id="ref39">52</reflink>] ; Havercamp et al. [<reflink idref="bib21" id="ref40">21</reflink>] ; Cobigo et al. [<reflink idref="bib11" id="ref41">11</reflink>] ). These programmes rely on mammography – the study of the breast using low dose X‐ray to produce images of breasts showing abnormal areas of density, mass or calcification that may indicate the presence of cancer. In the USA (Havercamp et al. [<reflink idref="bib21" id="ref42">21</reflink>] ), the proportion of women with intellectual and developmental disabilities not screened was found to be 2.1 times what it is in women without intellectual and developmental disabilities, while in Australia (Sullivan et al. [<reflink idref="bib52" id="ref43">52</reflink>] ), one study suggested the proportion of women with intellectual disabilities not receiving mammography was 1.4 times the proportion of women in the general population.</p> <p>New cases of cervical cancer are diagnosed in seven per 100 000 women annually in Canada (Steering Committee on Cancer Statistics [<reflink idref="bib51" id="ref44">51</reflink>] ). Human papillomavirus (HPV) infection, which is sexually transmitted, appears to be a necessary factor in the development of almost all cases of cervical cancer. The Papanicolaou test (also called Pap smear or test) is used to detect pre‐malignant and malignant lesions early so that they can be treated (Boyle &amp; Levin [<reflink idref="bib7" id="ref45">7</reflink>] ). Pap tests are conducted by family physicians or other healthcare providers during women's regular physical examinations. It requires the collection of cells from the outer opening of the cervix, and as such is considered an invasive procedure. Developments in cervical cancer screening related to the use of HPV serology testing suggest that the screening interval could be extended in low‐risk populations following a negative test. (Priebe [<reflink idref="bib47" id="ref46">47</reflink>] ).</p> <p>Cervical cancer screening has been reported to be three to five times lower among women with intellectual and developmental disabilities compared to women without such disabilities (Havercamp et al. [<reflink idref="bib21" id="ref47">21</reflink>] ; Reynolds et al. [<reflink idref="bib48" id="ref48">48</reflink>] ; Cobigo et al. [<reflink idref="bib11" id="ref49">11</reflink>] ).</p> <hd id="AN0102206062-4">Aim</hd> <p>The aim of the study was to compare the uptake of secondary prevention among eligible adults with and without intellectual disabilities in the same age ranges. Uptake was measured as having had a health exam over a two‐year period (adults 18–64 years), being up‐to‐date with colorectal cancer screening (adults 50–64 years) and, for women, having had a mammogram (if 50–64 years) and a Pap test (if 18–64 years) in a two‐year period.</p> <hd id="AN0102206062-5">Methods</hd> <p>Ethics approval to conduct this study was obtained from research ethics boards at Sunnybrook Health Sciences Centre and the Centre for Addiction and Mental Health in Toronto, Ontario.</p> <hd id="AN0102206062-6">Setting</hd> <p>Ontario's population, estimated at 13.3 million (Statistics Canada [<reflink idref="bib50" id="ref50">50</reflink>] ), is the largest of Canada's ten provinces and three territories. Universal coverage of insured health services is provided to Ontario residents through a single‐payer system; at the time of our study, these services included the periodic health examination (no more than once a year) and the screening for the three cancers considered (as described below).</p> <p>In 2008, Ontario instituted the first population‐based colorectal cancer screening programme in Canada – ColonCancerCheck. Biennial screening with the guaiac faecal occult blood test (FOBT) is recommended for individuals 50–74 years of age at average risk of colorectal cancer, followed by colonoscopy for those with an abnormal FOBT. For persons at increased risk because of a family history of the disease, screening by colonoscopy is recommended (beginning at age 50 or 10 years earlier than the age at which the relative was diagnosed, whichever occurs first) (Cancer Care Ontario [<reflink idref="bib10" id="ref51">10</reflink>] ). The FOBT requires the collection of stool samples over a period of several days. FOBT kits to collect samples at home are available through primary care physicians' offices, pharmacies and Telehealth Ontario.</p> <p>The Ontario breast screening programme (OBSP), which was established in 1990, provides biannual mammograms for women aged 50 and older. As an organized screening programme, the OBSP sends recall notices, communicates screening results to the women and helps initiate specialist care for women with abnormal mammograms.</p> <p>The Ontario cervical screening programme was launched in 2000. Until 2012, the programme followed the 1994 guideline from the Canadian Task Force on Preventive Health Care which recommended that women undergo screening within three years of sexual activity initiation and have a Pap test repeated every three years thereafter (Murphy et al. [<reflink idref="bib40" id="ref52">40</reflink>] ).</p> <hd id="AN0102206062-7">Data sources</hd> <p>The data for this study were accessed through Ontario's Institute for Clinical Evaluative Sciences (ICES; <ulink href="http://www.ices.on.ca">www.ices.on.ca</ulink>). Through an agreement with the Ontario Ministry of Health and Long‐Term Care, ICES houses administrative health databases that contain information used by the provincial government for funding and reimbursement purposes; ICES' holdings also include a registry that contains basic demographic information on all residents who have ever had an Ontario health insurance number, and provincial disease registries (including the Ontario Cancer Registry). Records for the same individual can be linked across these data sets through the use of an anonymized and encrypted unique identifier. A special data set was brought into ICES through a data sharing agreement with the Ministry of Community and Social Services, which administers the Ontario disability support programme (ODSP). ODSP provides income and employment supports to individuals with disabilities between 18 and 64 years of age. The programme collects demographic and basic diagnostic information for eligibility purposes. ODSP records for 2009/2010 were linked to the unique identifier at ICES using first name, last name, date of birth, gender and postal code (geographic locator).</p> <p>Once the ODSP data set was brought into ICES, the records were merged and linked with those in five administrative health databases that capture the majority of Ontario residents' encounters with the healthcare system: the Canadian Institute for Health Information's Discharge Abstracts Database (hospital discharges; information captured since 1988); the Same‐day Surgery Database (information captured since 1991); the National Ambulatory Care Reporting System Database (emergency visits; information captured since 2000); the Ontario Mental Health Reporting System Database (inpatient mental health bed discharges; information captured since 2000); and the Ontario Health Insurance Plan (OHIP) Database (contains fee codes and corresponding diagnostic codes submitted for billing purposes by fee‐for‐service physicians practicing in Ontario, and by most physicians compensated through alternative payment plans who are required to submit shadow billings; information captured since 1991). Additional linkages were made to records in the Registered Persons Database, which contains demographic information on all Ontario residents eligible for OHIP coverage (information captured since 1990); the Ontario Cancer Registry, a database containing information on all Ontario residents newly diagnosed with cancer (information captured since 1964); and area‐level information from the 2006 Canadian Census.</p> <hd id="AN0102206062-8">Study cohorts and variables</hd> <p>A cohort of individuals between 18 and 64 years of age as of 1 April 2009 with intellectual and developmental disabilities was created (the case definition includes all ICD‐9 and ICD‐10 diagnostic codes that reflect conditions consistent with the Ontario government's eligibility criteria for services and supports due to the presence of a developmental disability (Lin et al. [<reflink idref="bib33" id="ref53">33</reflink>] E. Lin, R. Balogh, B. Isaacs, H. Ouellette‐Kuntz, A. Selick, A. Wilton, V. Cobigo &amp; Y.Lunsky, under review). Twenty percentage of the Ontario population without an intellectual and developmental disability also 18 to 64 years of age on 1 April 2009 was randomly selected as a comparison group. Individuals had to be alive on 31 March 2010 and eligible for OHIP benefits through that date to be included in the cohorts.</p> <p>For the analysis described in this study, subsets of these two cohorts were created by selecting individuals who met the age and gender eligibility criteria for each preventive care practice. Individuals were excluded from the cancer screening analyses if they have been diagnosed prior to the look‐back period with the respective cancer. Look‐back periods were 1 April 2000 to 31 March 2010 for colorectal cancer, and 1 April 2009 to 31 March 2012 for cervical and breast cancer. Length of look‐back periods is determined by the screening recommendations. Individuals who had had a total colectomy were excluded from the colorectal cancer screening analysis, and women who had had a hysterectomy were excluded from the cervical cancer screening analysis.</p> <p>Uptake of the periodic health examination among adults 18 to 64 years of age was defined as having at least one Annual Health Examination billing code A003 (General assessment) with diagnostic code 917 (Annual health examination adolescent/adult) over a two‐year period (1 April 2009 to 31 March 2011) in the Ontario Health Insurance Plan Database.</p> <p>Participation in colorectal cancer screening was examined among individuals 50 to 64 years of age in both cohorts with an indicator used by the ColonCancerCheck programme in its 2010 report: up‐to‐date with colorectal tests, defined as one of the following: FOBT in the previous two years; sigmoidoscopy (fee code Z580 in the OHIP database) in the previous five years (1 April 2005–31 March 2010); or colonoscopy (fee code Z555 +/‐ other E codes in the OHIP database) in the previous ten years (1 April 2000–31 March 2010).</p> <p>The indicator of breast cancer screening among women 50 to 64 years of age in both cohorts comprised having had at least one mammogram between 1 April 2009 and 31 March 2011. A mammogram was defined as the presence during the study period of either: a) Ontario breast screening programme variable ‘mamdone’ = Y or b) Ontario Health Insurance Plan fee code ×185.</p> <p>The present authors counted as screened for cervical cancer, women 18–64 years of age in both cohorts who had at least one Pap test over a 3‐year period (1 April 2009 to 31 March 2012). A Pap test was defined as the presence of: a) Fee code G365 or G394 with fee suffix ‘A’, or b) E430 for Pap test billing, or C) L812, L713 (laboratory code).</p> <hd id="AN0102206062-9">Analysis</hd> <p>All analyses were performed by an ICES staff member using SAS v. 9.3 (Cary, NC, USA). The two cohorts (with and without intellectual and developmental disabilities) are described according to age and gender. Age and gender‐specific proportions of eligible adults in each cohort who obtained preventive care are presented and differences in prevalence proportions calculated.</p> <hd id="AN0102206062-10">Results</hd> <p>A total of 66 484 individuals comprised the cohort of adults with intellectual and developmental disabilities (Lin et al., [<reflink idref="bib33" id="ref54">33</reflink>] ; E. Lin, R. Balogh, B. Isaacs, H. Ouellette‐Kuntz, A. Selick, A. Wilton, V. Cobigo &amp; Y.Lunsky, under review). As noted, the size of the comparison cohort (without intellectual and developmental disabilities; n = 2 760 670) was set at 20% of the remaining residents of Ontario. The cohort of individuals with intellectual and developmental disabilities was younger (see Figure [NaN] ) and comprised more men (57.3% versus 49.1% for the comparison cohort). Table [NaN] compares age and gender‐specific (where appropriate) uptake proportions for each indicator of secondary prevention.</p> <p>Percentage of eligible Ontarians with and without intellectual and developmental disabilities who had a periodic health examination and participated in colorectal, breast and cervical cancer screening, by age and sex</p> <p> <ephtml> &lt;table&gt;&lt;tr&gt;&lt;th align="left" /&gt;&lt;th align="char"&gt;Indicator&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="char"&gt;Periodic health examination&lt;/th&gt;&lt;th align="char"&gt;Colorectal cancer screening&lt;/th&gt;&lt;th align="char"&gt;Breast cancer screening&lt;/th&gt;&lt;th align="char"&gt;Cervical cancer screening&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;th align="char"&gt;With intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Without intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Difference (With intellectual and developmental disabilities&amp;#x2013;Without intellectual and developmental disabilities)&lt;/th&gt;&lt;th align="char"&gt;With intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Without intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Difference (With intellectual and developmental disabilities&amp;#x2013;Without intellectual and developmental disabilities)&lt;/th&gt;&lt;th align="char"&gt;With intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Without intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Difference (With intellectual and developmental disabilities&amp;#x2013;Without intellectual and developmental disabilities)&lt;/th&gt;&lt;th align="char"&gt;With intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Without intellectual and developmental disabilities&lt;/th&gt;&lt;th align="char"&gt;Difference (With intellectual and developmental disabilities&amp;#x2013;Without intellectual and developmental disabilities)&lt;/th&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Age group, years&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;18&amp;#x2013;24&lt;/td&gt;&lt;td align="char" char="."&gt;16.0&lt;/td&gt;&lt;td align="char" char="."&gt;18.1&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;2.1&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char" /&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char" /&gt;&lt;td align="char" char="."&gt;33.3&lt;/td&gt;&lt;td align="char" char="."&gt;62.4&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;29.1&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;25&amp;#x2013;34&lt;/td&gt;&lt;td align="char" char="."&gt;19.9&lt;/td&gt;&lt;td align="char" char="."&gt;21.8&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;1.9&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char" char="."&gt;37.3&lt;/td&gt;&lt;td align="char" char="."&gt;70.0&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;32.7&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;35&amp;#x2013;44&lt;/td&gt;&lt;td align="char" char="."&gt;24.7&lt;/td&gt;&lt;td align="char" char="."&gt;27.8&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;3.1&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char" char="."&gt;37.1&lt;/td&gt;&lt;td align="char" char="."&gt;70.5&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;33.4&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;45&amp;#x2013;54&lt;/td&gt;&lt;td align="char" char="."&gt;26.5&lt;/td&gt;&lt;td align="char" char="."&gt;30.4&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;3.9&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char" char="."&gt;33.7&lt;/td&gt;&lt;td align="char" char="."&gt;68.8&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;35.1&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;50&amp;#x2013;54&lt;/td&gt;&lt;td align="char" char="."&gt;24.2&lt;/td&gt;&lt;td align="char" char="."&gt;31.0&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;6.8&lt;/td&gt;&lt;td align="char"&gt;28.8&lt;/td&gt;&lt;td align="char" char="."&gt;39.5&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;10.7&lt;/td&gt;&lt;td align="char" char="."&gt;48.2&lt;/td&gt;&lt;td align="char" char="."&gt;65.1&lt;/td&gt;&lt;td align="char" char="."&gt;&amp;#x2212;16.9&lt;/td&gt;&lt;td align="char" char="."&gt;23.9&lt;/td&gt;&lt;td align="char" char="."&gt;58.3&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;34.4&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;55&amp;#x2013;59&lt;/td&gt;&lt;td align="char"&gt;33.1&lt;/td&gt;&lt;td align="char" char="."&gt;49.4&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;16.3&lt;/td&gt;&lt;td align="char" char="."&gt;54.4&lt;/td&gt;&lt;td align="char" char="."&gt;73.1&lt;/td&gt;&lt;td align="char" char="."&gt;&amp;#x2212;18.6&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;60&amp;#x2013;64&lt;/td&gt;&lt;td align="char"&gt;36.1&lt;/td&gt;&lt;td align="char" char="."&gt;55.1&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;19.0&lt;/td&gt;&lt;td align="char" char="."&gt;56.2&lt;/td&gt;&lt;td align="char" char="."&gt;75.7&lt;/td&gt;&lt;td align="char" char="."&gt;&amp;#x2212;19.5&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2013;&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left" char="&amp;#x2212;"&gt;Sex&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Male&lt;/td&gt;&lt;td align="char" char="."&gt;19.9&lt;/td&gt;&lt;td align="char" char="."&gt;20.5&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;0.6&lt;/td&gt;&lt;td align="char"&gt;29.7&lt;/td&gt;&lt;td align="char" char="."&gt;44.1&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;14.4&lt;/td&gt;&lt;td align="char" /&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Female&lt;/td&gt;&lt;td align="char" char="."&gt;24.7&lt;/td&gt;&lt;td align="char" char="."&gt;32.0&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;7.3&lt;/td&gt;&lt;td align="char"&gt;34.6&lt;/td&gt;&lt;td align="char" char="."&gt;50.1&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;15.5&lt;/td&gt;&lt;/tr&gt;&lt;tr&gt;&lt;td align="left"&gt;Overall&lt;/td&gt;&lt;td align="char" char="."&gt;22.0&lt;/td&gt;&lt;td align="char" char="."&gt;26.4&lt;/td&gt;&lt;td align="char" char="&amp;#x2212;"&gt;&amp;#x2212;4.4&lt;/td&gt;&lt;td align="char"&gt;32.0&lt;/td&gt;&lt;td align="char" char="."&gt;47.2&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;15.2&lt;/td&gt;&lt;td align="char" char="."&gt;52.2&lt;/td&gt;&lt;td align="char" char="."&gt;70.7&lt;/td&gt;&lt;td align="char" char="."&gt;&amp;#x2212;18.5&lt;/td&gt;&lt;td align="char" char="."&gt;33.7&lt;/td&gt;&lt;td align="char" char="."&gt;66.7&lt;/td&gt;&lt;td align="char"&gt;&amp;#x2212;33.0&lt;/td&gt;&lt;/tr&gt;&lt;/table&gt; </ephtml> </p> <p>Only 22% of the 66 484 adults with intellectual and developmental disabilities had a periodic health examination in a two‐year period (compared to 26.4% of the 2 760 670 adults without intellectual and developmental disabilities). This difference between the two groups increased with age. In both groups, men were less likely than women to have this examination. However, the difference between those with and without intellectual and developmental disabilities was only observed among women (24.7% versus 32.0%) with rates in men being similar among those with and without intellectual and developmental disabilities (19.9% versus 20.5%).</p> <p>Fewer of the 15 791 eligible adults with intellectual and developmental disabilities 50 to 64 years of age were up‐to‐date with colorectal cancer screening (32.0% versus 47.2% among 791 792 eligible adults without intellectual and developmental disabilities). Screening increased with age in both cohorts but the gap increases as individuals get older. Colorectal cancer screening was more common in women than men in both cohorts. The observed difference in colorectal cancer screening between the cohorts also existed for faecal occult blood testing (18.3% versus 26.4%).</p> <p>Only 52.2% of the 7022 women with intellectual and developmental disabilities eligible for breast cancer screening had a mammogram compared to 70.7% of the 402 589 women without intellectual and developmental disabilities. The uptake of mammography increased with age in both cohorts.</p> <p>Just over a third (33.7%) of the 26 301 eligible women with intellectual and developmental disabilities (18–64 years of age) had a Pap test in 2009–2012 compared to 66.7% of the 1 304 279 eligible women without intellectual and developmental disabilities. The same age pattern with regard to the Pap test uptake was observed in the two cohorts with the highest proportion screened being 25–44 years of age.</p> <hd id="AN0102206062-11">Conclusions</hd> <hd id="AN0102206062-12">Periodic health examination</hd> <p>The proportion of adults with intellectual and developmental disabilities receiving a periodic health examination is low yet not very different from what is observed in the general population (22.0% versus 26.4%). In light of the internationally growing literature in support of the periodic health examination for adults with intellectual and developmental disabilities, Australia and Wales instituted specific funding to physicians as an incentive to perform annual health assessments for adults with intellectual and developmental disabilities in 2006 (Perry et al. [<reflink idref="bib45" id="ref55">45</reflink>] ; Lennox et al. [<reflink idref="bib31" id="ref56">31</reflink>] ). In 2009, the practice was extended across the UK (Glover et al. [<reflink idref="bib17" id="ref57">17</reflink>] ). There is currently no incentive in Ontario for physicians to perform such annual health assessments for adults with intellectual and developmental disabilities specifically. Physicians can bill OHIP for the periodic health examination of adults once a year, but there is no additional compensation to encourage physicians to target adults with intellectual and developmental disabilities or to account for the complexity presented by many. In Wales, when combined with notifications of the importance of the examination being sent to adults with intellectual and developmental disabilities and their caregivers, this incentive resulted in the uptake of the annual health assessment in this population increasing from 27% in 2007 to 42% in 2009 (Perry et al. [<reflink idref="bib46" id="ref58">46</reflink>] date).</p> <p>In 2011, the Canadian consensus guidelines for the primary care of adults with intellectual and developmental disabilities (Sullivan et al. [<reflink idref="bib55" id="ref59">55</reflink>] ) were revised to include more specificity around the recommendation regarding the periodic health examination. The updated guidelines state ‘perform an annual comprehensive preventive care assessment including physical examination and use guidelines and tools adapted for adults with [intellectual and] developmental disability’.</p> <hd id="AN0102206062-13">Cancer screening</hd> <p>Our analyses clearly show that adults with intellectual and developmental disabilities are disadvantaged when it comes to cancer screening. Differences in proportions of eligible adults with and without intellectual and developmental disabilities screened ranged from 15.2% for colorectal cancer to 33.0% for cervical cancer.</p> <p>Previous research has highlighted the lack of knowledge and training among healthcare professionals and technicians on the health and support needs of adults with intellectual and developmental disabilities (Willis et al. [<reflink idref="bib62" id="ref60">62</reflink>] ). One important issue is the belief that this group is not at risk for cancer, and thus, screening is not required. This is particularly the case with respect to breast and cervical cancer. However, men and women with intellectual and developmental disabilities now live until the age of 71 years on average and thus are at risk for age‐related diseases (Bittles et al. [<reflink idref="bib6" id="ref61">6</reflink>] ). While a lower incidence of solid tumours has been reported in individuals with Down syndrome (Hasle et al. [<reflink idref="bib20" id="ref62">20</reflink>] ; Hasle [<reflink idref="bib19" id="ref63">19</reflink>] ; Hill et al. [<reflink idref="bib22" id="ref64">22</reflink>] ; Willis et al. [<reflink idref="bib62" id="ref65">62</reflink>] ), it is expected that the differences reported are too large to be explained solely by this factor. Individuals with Down syndrome make up &lt;20% of the population of adults with intellectual and developmental disabilities (Maulik &amp; Harbour [<reflink idref="bib36" id="ref66">36</reflink>] ).</p> <p>Given the known barriers to cancer screening among individuals with intellectual and developmental disabilities; namely challenges in obtaining valid consent, lack of knowledge, fear and embarrassment, interventions tailored to the communication skills of adults with intellectual and developmental disabilities are required to increase their knowledge of the procedure and their benefits, decrease their anxiety and thus allow them to give informed consent (e.g. Broughton [<reflink idref="bib8" id="ref67">8</reflink>] ; Lunsky et al. [<reflink idref="bib34" id="ref68">34</reflink>] ; Biswas et al. [<reflink idref="bib5" id="ref69">5</reflink>] ; Parish et al. [<reflink idref="bib42" id="ref70">42</reflink>] ,[<reflink idref="bib43" id="ref71">43</reflink>] ). The role of family caregivers and paid staff is crucial in providing information about cancer screening, supporting the person during the procedure and reporting any potential symptoms of cancer to health professionals (Hanna et al. [<reflink idref="bib18" id="ref72">18</reflink>] ; Taggart et al. [<reflink idref="bib56" id="ref73">56</reflink>] ). Information and training are required to support caregivers and staff in this role.</p> <p>Finally, the specific cancer screening procedures present unique challenges and risks that require consideration. These are described next.</p> <hd id="AN0102206062-14">Colorectal cancer screening</hd> <p>In 2009/2010, more than 2/3 of adults with intellectual and developmental disabilities 50 to 64 years of age were unscreened for colorectal cancer. Recognizing that the uptake of colorectal cancer screening in 2009/2010 across Ontario remained below established targets, in 2010, ColonCancerCheck launched an invitation system to increase screening participation. Recall letters were sent to those who were due for their biennial repeat screening (two years after a normal FOBT), and invitations were sent to newly screen‐eligible Ontarians. In its 2010 programme report, ColonCancerCheck also stated that it was planning to send invitations to all eligible residents who were under‐screened or who had never been screened (Cancer Care Ontario [<reflink idref="bib10" id="ref74">10</reflink>] ). This may increase uptake among adults with intellectual and developmental disabilities. However, to be effective in increasing uptake among adults with intellectual and developmental disabilities, it is expected that this strategy will require targeted interventions.</p> <p>Colorectal cancer screening requires the involvement and education of caregivers. Most adults with intellectual and developmental disabilities will need to rely on others (family or paid caregivers) to support them to obtain reliable stool samples and/or to adequately prepare for a colonoscopy. To ensure compliance, targeted awareness and education campaigns must be directed at these caregivers in addition to adults with intellectual and developmental disabilities.</p> <p>In light of the challenges in obtaining stool samples and the risk of complications from colonoscopy in some individuals with intellectual and developmental disabilities, further research is needed to ascertain the prevalence of colorectal cancer in this population. Determining the risk–benefit of colorectal cancer screening in adults with intellectual and developmental disabilities requires knowledge of the risk of colorectal cancer itself in this population.</p> <hd id="AN0102206062-15">Breast cancer screening</hd> <p>Since the introduction of breast cancer screening to routine preventative care, media campaigns have increased public awareness towards its relevance. Observed differences in uptake call for more intensive and group‐specific or individually tailored awareness and education strategies for women with intellectual and developmental disabilities in Ontario (Finney Rutten et al. [<reflink idref="bib14" id="ref75">14</reflink>] ).</p> <p>Our finding that nearly half of eligible women with intellectual and developmental disabilities were not screened, also calls for consideration of barriers to access. Other jurisdictions have identified logistic and practical barriers including issues related to transportation to the healthcare facilities (Willis et al. [<reflink idref="bib62" id="ref76">62</reflink>] ), the need to adapt techniques when used with persons who have a physical disability (Willis et al. [<reflink idref="bib62" id="ref77">62</reflink>] ; Tyler et al. [<reflink idref="bib58" id="ref78">58</reflink>] ), and the requirement for technicians and health professionals to spend more time with women with intellectual and developmental disabilities to accommodate their needs and provide information on the procedure (Wilkinson et al. [<reflink idref="bib61" id="ref79">61</reflink>] ). The relevance of these factors should be studied in Ontario.</p> <hd id="AN0102206062-16">Cervical cancer screening</hd> <p>Pap smears are only recommended for women who have been sexually active (Cancer Care Ontario [<reflink idref="bib9" id="ref80">9</reflink>] ), but women with intellectual and developmental disabilities might find it difficult to communicate their sexual history and may have experienced non‐consensual sexual activity that they cannot or will not report (Reynolds et al. [<reflink idref="bib48" id="ref81">48</reflink>] ). Neither this study nor previously published studies showing differences in cervical cancer screening uptake among women with intellectual and developmental disabilities have been able to control for this factor. However, it is documented that many women with intellectual and developmental disabilities experience sexual relationships (Gesualdi [<reflink idref="bib16" id="ref82">16</reflink>] ; Wood &amp; Douglas [<reflink idref="bib64" id="ref83">64</reflink>] ; Reynolds et al. [<reflink idref="bib48" id="ref84">48</reflink>] ), and thus, the difference in screening observed is unlikely to be fully explained by a lower proportion of women who have been sexually active among the group with intellectual and developmental disabilities.</p> <p>Adapted information, education and support are needed to ensure women with intellectual and developmental disabilities are appropriately protected (HPV immunization) and screened for cervical cancer. HPV serology testing might provide a viable alternative to the Pap test for cervical cancer screening in low‐risk women with intellectual and developmental disabilities.</p> <hd id="AN0102206062-17">Limitations</hd> <p>Our study was limited by the data available. Importantly, the present authors had to restrict our study to individuals between 18 and 64 years of age as that is the age eligibility for the disability pension (ODSP). As the life expectancy of adults with intellectual and developmental disabilities continues to increase, there is a need to develop data sources which will allow for the study of health and healthcare access among seniors (≥65 years). Previous research has demonstrated that adults with intellectual and developmental disabilities have poorer access to health care the more independently they live [alone versus with family versus in a group home versus in an institution (Bershadsky et al. [<reflink idref="bib3" id="ref85">3</reflink>] )]. Our data sources did not include a reliable indicator of such living arrangement. Finally, some highly relevant indicators could not be examined due to lack of access to laboratory data (e.g. H. pylori testing).</p> <p>To adequately assess the impact of low cancer screening uptake among adults with intellectual and developmental disabilities, studies of cancer‐specific incidence, treatment and mortality are required.</p> <hd id="AN0102206062-18">Implications for policy and practice</hd> <p>Findings show that having an intellectual and developmental disability leads to disparities in access to secondary prevention in Ontario beyond the effects of age, gender, income and location of residence. The use of population‐specific clinical guidelines and tools, such as the Canadian consensus guidelines on the primary care of adults with developmental disabilities (Sullivan et al. [<reflink idref="bib55" id="ref86">55</reflink>] ), is recommended. Successful implementation of such guidelines will require changes to policy and practice, including:</p> <p>Incentives to primary care providers for the provision of comprehensive annual health examinations to adults with intellectual and developmental disabilities.</p> <p>Information campaigns aimed at adults with intellectual and developmental disabilities and their caregivers.</p> <p>Education and training of healthcare providers including technicians, and including in supporting consent (McIlfatrick et al. [<reflink idref="bib39" id="ref87">39</reflink>] ; Parish et al. [<reflink idref="bib42" id="ref88">42</reflink>] ,[<reflink idref="bib43" id="ref89">43</reflink>] ).</p> <p>Adapted cancer screening strategies reflecting the needs and risks for adults with intellectual and developmental disabilities (e.g. safe colonoscopy preparation protocol, one‐on‐one counselling for breast cancer, HPV screening).</p> <p>Adults with intellectual and developmental disabilities in Ontario clearly experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province of Ontario and elsewhere continue to evolve, close monitoring of impacts for adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted.</p> <hd id="AN0102206062-19">Acknowledgments</hd> <p>The article is based on a broader report on healthcare access for adults with intellectual and developmental disabilities published for the province of Ontario, Canada. The resulting Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario (Lunsky et al. [<reflink idref="bib34" id="ref90">34</reflink>] ) is available at <ulink href="http://www.ices.on.ca/Publications/Atlases-and-Reports/2013/Atlas-on-Developmental-Disabilities">http://www.ices.on.ca/Publications/Atlases-and-Reports/2013/Atlas-on-Developmental-Disabilities</ulink>. The research program was funded by a Canadian Institutes of Health Research (CIHR) Partnerships in Health Systems Improvement Grant (PHE# 103973) in partnership witth the Ontario Ministry of Community and Social Services and Surrey Place Center. The work was also supported by the Centre for Addiction and Mental Health (CAMH) and the Institute for Clinical Evaluative Sciences (ICES), which receive annual grants from the Ontario Ministry of Health and Long‐Term Care (MOHLTC), as well as by CAMH and Fonds de Recherche en Sante du Quebec postdoctoral support for R. Balogh and V. Cobigo. The opinions, results and conclusions reported in this paper are those of the authors and are not necessarily those of the funding sources. No endorsement by CIHR, CAMH, ICES, the Ontario MOHLTC, or the Fonds de Recherche en Sante du Quebec is intended or should be inferred. The authors gratefully acknowledge the assistance of Felicia Leung and Helen Coo with the review of the literature and guideline.</p> <ref id="AN0102206062-20"> <title>References</title> <blist> <bibl id="bib1" idref="ref24" type="bt">1</bibl> <bibtext>Baxter H., Lowe K., Houston H., Jones G., Felce D. &amp; Kerr M. ( 2006 ) Previously unidentified morbidity in patients with intellectual disabilities. The British Journal of General Practice 56, 93 – 98. </bibtext> </blist> <blist> <bibl id="bib2" idref="ref1" type="bt">2</bibl> <bibtext>Beange H., McElduff A. &amp; Baker W. ( 1995 ) Medical disorders of adults with mental retardation: a population study. 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| Items | – Name: Title Label: Title Group: Ti Data: The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities – Name: Language Label: Language Group: Lang Data: English – Name: Author Label: Authors Group: Au Data: <searchLink fieldCode="AR" term="%22Ouellette-Kuntz%2C+H%2E%22">Ouellette-Kuntz, H.</searchLink><br /><searchLink fieldCode="AR" term="%22Cobigo%2C+V%2E%22">Cobigo, V.</searchLink><br /><searchLink fieldCode="AR" term="%22Balogh%2C+R%2E%22">Balogh, R.</searchLink><br /><searchLink fieldCode="AR" term="%22Wilton%2C+A%2E%22">Wilton, A.</searchLink><br /><searchLink fieldCode="AR" term="%22Lunsky%2C+Y%2E%22">Lunsky, Y.</searchLink> – Name: TitleSource Label: Source Group: Src Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Jan 2015 28(1):43-54. – Name: Avail Label: Availability Group: Avail 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 – Name: PeerReviewed Label: Peer Reviewed Group: SrcInfo Data: Y – Name: Pages Label: Page Count Group: Src Data: 12 – Name: DatePubCY Label: Publication Date Group: Date Data: 2015 – Name: TypeDocument Label: Document Type Group: TypDoc Data: Journal Articles<br />Reports - Research – Name: Subject Label: Descriptors Group: Su Data: <searchLink fieldCode="DE" term="%22Developmental+Disabilities%22">Developmental Disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Prevention%22">Prevention</searchLink><br /><searchLink fieldCode="DE" term="%22Adults%22">Adults</searchLink><br /><searchLink fieldCode="DE" term="%22Early+Intervention%22">Early Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Guidelines%22">Guidelines</searchLink><br /><searchLink fieldCode="DE" term="%22Prereferral+Intervention%22">Prereferral Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Screening+Tests%22">Screening Tests</searchLink><br /><searchLink fieldCode="DE" term="%22Age+Differences%22">Age Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Gender+Differences%22">Gender Differences</searchLink><br /><searchLink fieldCode="DE" term="%22Cancer%22">Cancer</searchLink><br /><searchLink fieldCode="DE" term="%22Primary+Health+Care%22">Primary Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Access+to+Health+Care%22">Access to Health Care</searchLink><br /><searchLink fieldCode="DE" term="%22Change+Strategies%22">Change Strategies</searchLink><br /><searchLink fieldCode="DE" term="%22Delivery+Systems%22">Delivery Systems</searchLink><br /><searchLink fieldCode="DE" term="%22Foreign+Countries%22">Foreign Countries</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Services%22">Health Services</searchLink><br /><searchLink fieldCode="DE" term="%22Health+Conditions%22">Health Conditions</searchLink> – Name: Subject Label: Geographic Terms Group: Su Data: <searchLink fieldCode="DE" term="%22Canada%22">Canada</searchLink> – Name: DOI Label: DOI Group: ID Data: 10.1111/jar.12133 – Name: ISSN Label: ISSN Group: ISSN Data: 1360-2322 – Name: Abstract Label: Abstract Group: Ab Data: Background: Secondary prevention involves the early detection of disease while it is asymptomatic to prevent its progression. For adults with intellectual and developmental disabilities, secondary prevention is critical as they may not have the ability to recognize the early signs and symptoms of disease or lack accessible information about these. Methods: Linked administrative health and social service data were used to document uptake related to four secondary prevention guidelines among adults with intellectual and developmental disabilities. Rates were compared to those from a general population sample representing the same age ranges. Results: Of 22% of adults with intellectual and developmental disabilities had a periodic health examination in a two-year period (compared to 26.4% of adults without intellectual and developmental disabilities). Adults with intellectual and developmental disabilities were less likely to undergo recommended age and gender-specific screening for the three types of cancer studied (colorectal, breast and cervical). Conclusions: Adults with intellectual and developmental disabilities in Ontario experience disparities in secondary prevention. As changes to primary care delivery and secondary prevention recommendations in the province and elsewhere continue to evolve, close monitoring of the impacts on adults with intellectual and developmental disabilities combined with dedicated efforts to increase access is warranted. – Name: AbstractInfo Label: Abstractor Group: Ab Data: As Provided – Name: DateEntry Label: Entry Date Group: Date Data: 2014 – Name: AN Label: Accession Number Group: ID Data: EJ1048408 |
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| RecordInfo | BibRecord: BibEntity: Identifiers: – Type: doi Value: 10.1111/jar.12133 Languages: – Text: English PhysicalDescription: Pagination: PageCount: 12 StartPage: 43 Subjects: – SubjectFull: Developmental Disabilities Type: general – SubjectFull: Mental Retardation Type: general – SubjectFull: Prevention Type: general – SubjectFull: Adults Type: general – SubjectFull: Early Intervention Type: general – SubjectFull: Guidelines Type: general – SubjectFull: Prereferral Intervention Type: general – SubjectFull: Screening Tests Type: general – SubjectFull: Age Differences Type: general – SubjectFull: Gender Differences Type: general – SubjectFull: Cancer Type: general – SubjectFull: Primary Health Care Type: general – SubjectFull: Access to Health Care Type: general – SubjectFull: Change Strategies Type: general – SubjectFull: Delivery Systems Type: general – SubjectFull: Foreign Countries Type: general – SubjectFull: Health Services Type: general – SubjectFull: Health Conditions Type: general – SubjectFull: Canada Type: general Titles: – TitleFull: The Uptake of Secondary Prevention by Adults with Intellectual and Developmental Disabilities Type: main BibRelationships: HasContributorRelationships: – PersonEntity: Name: NameFull: Ouellette-Kuntz, H. – PersonEntity: Name: NameFull: Cobigo, V. – PersonEntity: Name: NameFull: Balogh, R. – PersonEntity: Name: NameFull: Wilton, A. – PersonEntity: Name: NameFull: Lunsky, Y. IsPartOfRelationships: – BibEntity: Dates: – D: 01 M: 01 Type: published Y: 2015 Identifiers: – Type: issn-print Value: 1360-2322 Numbering: – Type: volume Value: 28 – Type: issue Value: 1 Titles: – TitleFull: Journal of Applied Research in Intellectual Disabilities Type: main |
| ResultId | 1 |