Bettering cancer screening for people with intellectual disabilities - Royal Society of Edinburgh : Royal Society of Edinburgh

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Professor Deborah Cairns, RSE International Joint Projects awardee collaborated with colleagues at the University of New South Wales in Australia to address this important but under-researched area." /> <meta property="og:url" content="https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/" /> <meta property="og:site_name" content="Royal Society of Edinburgh" /> <meta property="article:publisher" content="https://www.facebook.com/RoyalSocEd" /> <meta property="article:published_time" content="2024-06-12T08:01:06+00:00" /> <meta property="article:modified_time" content="2024-08-23T11:25:11+00:00" /> <meta property="og:image" content="https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg" /> <meta property="og:image:width" content="2560" /> <meta property="og:image:height" content="1707" /> <meta property="og:image:type" content="image/jpeg" /> <meta name="author" content="James Thomas" /> <meta name="twitter:card" content="summary_large_image" /> <meta name="twitter:creator" content="@RoyalSocEd" /> <meta name="twitter:site" content="@RoyalSocEd" /> <meta name="twitter:label1" content="Written by" /> <meta name="twitter:data1" content="James Thomas" /> <meta name="twitter:label2" content="Estimated reading time" /> <meta name="twitter:data2" content="4 minutes" /> <script type="application/ld+json" class="yoast-schema-graph">{"@context":"https://schema.org","@graph":[{"@type":"Article","@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#article","isPartOf":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/"},"author":{"name":"James Thomas","@id":"https://rse.org.uk/#/schema/person/e5613e62f364bb22399df84084a67c9d"},"headline":"Bettering cancer screening for people with intellectual disabilities","datePublished":"2024-06-12T08:01:06+00:00","dateModified":"2024-08-23T11:25:11+00:00","mainEntityOfPage":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/"},"wordCount":1002,"publisher":{"@id":"https://rse.org.uk/#organization"},"image":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#primaryimage"},"thumbnailUrl":"https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg","articleSection":["Case study"],"inLanguage":"en-GB"},{"@type":"WebPage","@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/","url":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/","name":"Bettering cancer screening for people with intellectual disabilities - Royal Society of Edinburgh","isPartOf":{"@id":"https://rse.org.uk/#website"},"primaryImageOfPage":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#primaryimage"},"image":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#primaryimage"},"thumbnailUrl":"https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg","datePublished":"2024-06-12T08:01:06+00:00","dateModified":"2024-08-23T11:25:11+00:00","breadcrumb":{"@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#breadcrumb"},"inLanguage":"en-GB","potentialAction":[{"@type":"ReadAction","target":["https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/"]}]},{"@type":"ImageObject","inLanguage":"en-GB","@id":"https://rse.org.uk/bettering-cancer-screening-for-people-with-intellectual-disabilities/#primaryimage","url":"https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg","contentUrl":"https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg","width":2560,"height":1707,"caption":"L-R: Professor Katie Robb and Professor Deborah Cairns. 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mobile" role="navigation"> <ul class="main-menu nav"> <li><a href="https://rse.org.uk/login"> <span>Login</span> <svg class="svg-icon"><use xlink:href="https://rse.org.uk/wp-content/themes/hillside-rse/assets/images/icons/symbol-defs.svg#icon-login"></use></svg> </a> </li> </ul> </div> </div> </nav> </div> </header> <main role="main" class="wrapper" id="maincontent"> <nav aria-label="Breadcrumb" class="breadcrumbs container padding-top-none padding-bottom-none"> <ol id="hs-breadcrumb" class="hs-breadcrumb"><li class="item"><a href="https://rse.org.uk">Home</a></li><li class="item"><a href="https://rse.org.uk/news/">News</a></li><li class="item item-cat"><a href="https://rse.org.uk/category/case-study/">Case study</a></li><li class="item item-current">Bettering cancer screening for people with intellectual disabilities</li></ol> </nav> <section> <div class="container padding-bottom-none"> <div class="row"> <div class="column"> <span class="post-date">Published on <time datetime="2024-06-12 09:01">12 June 2024</time></span> <h1 class="post-title">Bettering cancer screening for people with intellectual disabilities</h1> <p class="text-large">Professor Deborah Cairns, University of Glasgow<br /> RSE International Joint Projects Awardee</p> <figure id="attachment_43465" aria-describedby="caption-attachment-43465" class="wp-caption aligncenter"><img fetchpriority="high" decoding="async" class="size-full wp-image-43465 lazyload" src="data:image/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==" alt="" width="2560" height="1707" sizes="(max-width: 2560px) 100vw, 2560px" data-src="https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg" data-srcset="https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-scaled.jpg 2560w, https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-600x400.jpg 600w, https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-900x600.jpg 900w, https://rse.org.uk/wp-content/uploads/2024/06/RSE-Portraits_20-1200x800.jpg 1200w"><figcaption id="caption-attachment-43465" class="wp-caption-text">L-R: Professor Katie Robb and Professor Deborah Cairns. Photo: Ian Georgeson Photography</figcaption></figure> <p>Cancer screening programmes can reduce deaths; however, they fail to sufficiently engage people with intellectual disabilities, leading to low uptake.</p> <p>The health profile of people with intellectual disabilities differs from the general population. Adults with intellectual disabilities have significantly more complex patterns of patterns of multimorbidity, beginning earlier in life. They have poorer health outcomes, including premature mortality (Cooper 2015, Kinnear 2018, McCarron 2013, White 2022), dying 20 years earlier than other people (O’Leary 2018). Reasons for premature deaths in people with intellectual disabilities include poor uptake of cancer screening, delays/problems with diagnosis/treatment, problems with identifying needs, and difficulty in providing appropriate care in response to changing needs (Cuypers 2021).</p> <p>The challenge is that screening programmes fail to sufficiently engage the most vulnerable populations, leading to persistent inequalities in uptake (Cuypers 2024). Furthermore, a national Scottish study reported that colorectal and breast cancer were among the most likely diagnosed cancers in adults with intellectual disabilities; and they were more likely to die from these cancers compared to the general population. The study also found that adults with intellectual disabilities were diagnosed at more advanced stages and were more likely to die from metastatic cancer of unknown primary origin compared to the general population (Ward 2024).</p> <p>Professor Deborah Cairns, Director of the <a href="http://sldo.ac.uk">Scottish Learning Disabilities Observatory</a> at the University of Glasgow, was awarded an <a href="https://rse.org.uk/funding-collaboration/award/rse-joint-projects/">RSE International Joint Projects award</a> to collaborate with colleagues at the University of New South Wales in Australia to address this important but under-researched area.</p> <p>Both institutions in Scotland and Australia are conducting complementary work, including:</p> <ul> <li>Defining a collective agenda to improve access and uptake.</li> <li>Describing the organisation of cancer screening in both countries for people with intellectual disabilities.</li> <li>Collating, sharing, and comparing its research findings.</li> </ul> <p>They aim to deliver a shared vision of improving access to cancer screening for people with intellectual disabilities, which they will use to leverage further grant funding to expand their research.</p> <figure id="attachment_43466" aria-describedby="caption-attachment-43466" class="wp-caption aligncenter"><img decoding="async" class="wp-image-43466 size-thumbnail lazyload" src="data:image/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==" alt="" width="300" height="300" sizes="(max-width: 300px) 100vw, 300px" data-src="https://rse.org.uk/wp-content/uploads/2024/06/Professor-Deborah-Cairns-300x300.jpg" data-srcset="https://rse.org.uk/wp-content/uploads/2024/06/Professor-Deborah-Cairns-300x300.jpg 300w, https://rse.org.uk/wp-content/uploads/2024/06/Professor-Deborah-Cairns-600x600.jpg 600w, https://rse.org.uk/wp-content/uploads/2024/06/Professor-Deborah-Cairns-400x400.jpg 400w, https://rse.org.uk/wp-content/uploads/2024/06/Professor-Deborah-Cairns.jpg 800w"><figcaption id="caption-attachment-43466" class="wp-caption-text">Professor Deborah Cairns, University of Glasgow | Photo: Ian Georgeson Photography</figcaption></figure> <blockquote><p>Cancer research among people with intellectual disabilities is neglected and underfunded, and we need diversity in our approach as a research community. I am working with Professor Katie Robb, Lead for the Cancer Behaviour Research Group, here at the University of Glasgow and it is our mission to improve access to cancer screening both nationally and internationally, ultimately reducing mortality rates of cancer in people with intellectual disabilities. We will share our evidence widely with stakeholders, including policymakers, practitioners, carers, people with intellectual disabilities, and specialists on an international scale, and we will challenge systems and attitudes that stand in the way of change. We will deliver impact by securing a commitment to action from key stakeholders to ensure people with intellectual disabilities have equal access to screening services.”<br /> <strong>Professor Cairns</strong></p></blockquote> <p>The award has enabled the researchers in Scotland to share best practices with some of the leading international experts in cancer screening and intellectual disabilities. Professor Cairns said,</p> <blockquote><p>We have shared key research findings in each country, discussed different methodological approaches to investigate cancer incidence, screening and mortality, and deliberated current and future programmes of work that will benefit both countries. We visited Australia, where we presented to members from the University of New South Wales, the University of Sydney, the University of Melbourne, cancer charities, and health technology analysts. This network all had an interest in our cancer screening work in Scotland and the desire and drive to deliver real change to the current health inequalities faced by people with intellectual disabilities.”</p></blockquote> <p>Looking to the future, Professor Cairns, Professor Robb, and colleagues at the University of New South Wales hope to submit a grant application for the project: Accessible Breast Screening for people with intellectual disability: the role of navigators (Lead: University of New South Wales) alongside another to develop the project: Are mammograms ‘fit for purpose’ for people with intellectual disabilities with varying levels of disability or needs (Lead: University of Glasgow). They also plan to lead three symposia at the World Congress of the International Association for the Scientific Study of Intellectual and Developmental Disabilities, along with academics from Ireland and the Netherlands.</p> <p>Professor Cairns’ ultimate goal is to increase cancer screening uptake nationally and internationally and reduce mortality rates in this vulnerable population.</p> <p>To read more about this project, please visit: Cancer incidence and mortality in adults with learning disabilities | Our research | Scottish Learning Disabilities Observatory (sldo.ac.uk)</p> <h3>References</h3> <p>Cooper, S-A. et al. (2015). Multiple physical and mental health comorbidity in adults with intellectual disabilities: population-based cross-sectional analysis. BMC Family Practice, 16(1), 110. <a href="https://doi.org/10.1186/s12875-015-0329-3">https://doi.org/10.1186/s12875-015-0329-3</a></p> <p>Cuypers, M. et al. (2021). Cancer‐related mortality among people with intellectual disabilities: A nationwide population‐based cohort study. Cancer. <a href="https://doi.org/10.1002/cncr.34030">https://doi.org/10.1002/cncr.34030</a></p> <p>Cuypers M, Cairns D, Robb KA (2024). Identifying the deficits in cancer care for people with intellectual disabilities BMJ Oncology 2024; 3: e000171. doi: 10.1136/bmjonc-2023-000171 <a href="https://bmjoncology.bmj.com/content/bmjonc/3/1/e000171.full.pdf">https://bmjoncology.bmj.com/content/bmjonc/3/1/e000171.full.pdf</a></p> <p>Kinnear, D. et al. (2018). Prevalence of physical conditions and multimorbidity in a cohort of adults with intellectual disabilities with and without Down syndrome: Cross-sectional study. BMJ Open, 8(2). <a href="https://doi.org/10.1136/bmjopen-2017-018292">https://doi.org/10.1136/bmjopen-2017-018292</a></p> <p>McCarron et al. (2013). Patterns of multimorbidity in an older population of persons with an intellectual disability: Results from the intellectual disability supplement to the Irish longitudinal study on ageing (IDS-TILDA). RDD, 34(1), 521–527. <a href="https://doi.org/10.1016/j.ridd.2012.07.029">https://doi.org/10.1016/j.ridd.2012.07.029</a></p> <p>O’Leary, L. et al. (2018). Early death and causes of death of people with intellectual disabilities: A systematic review. JARID, 31(3), 325–342. <a href="https://doi.org/10.1111/jar.12417">https://doi.org/10.1111/jar.12417</a></p> <p>Ward L.A. et al. (2024). Population-based cancer incidence and mortality rates and ratios among adults with intellectual disabilities in Scotland. MedRxiv 2024.01.18.23300433; doi: <a href="https://doi.org/10.1101/2024.01.18.23300433">https://doi.org/10.1101/2024.01.18.23300433</a></p> <p>White, A. et al. (2022). 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rel="tag">Case study</a> </span> </div> <a href="https://rse.org.uk/the-lost-world-of-filmstrips/" title="The lost world of filmstrips"> <img width="600" height="400" src="data:image/gif;base64,R0lGODlhAQABAAAAACH5BAEKAAEALAAAAAABAAEAAAICTAEAOw==" class="img-responsive wp-post-image lazyload" alt="Professor Tom Rice. Photograph: Gayle McIntyre" decoding="async" sizes="(max-width: 600px) 100vw, 600px" loading="lazy" data-src="https://rse.org.uk/wp-content/uploads/2024/06/2024-06-19-Tom-Rice-GEM-IMG_4128-600x400.jpg" data-srcset="https://rse.org.uk/wp-content/uploads/2024/06/2024-06-19-Tom-Rice-GEM-IMG_4128-600x400.jpg 600w, https://rse.org.uk/wp-content/uploads/2024/06/2024-06-19-Tom-Rice-GEM-IMG_4128-900x600.jpg 900w"> </a> </div> <div class="card-header"> <span class="post-date"><time datetime="2024-06-26 12:14">26 June 2024</time></span> <h2> <a href="https://rse.org.uk/the-lost-world-of-filmstrips/">The lost world of filmstrips</a> </h2> </div> <div class="card-body"> <div class="scroll-box"> <p>Professor Tom Rice leads a project uncovering the forgotten 35mm filmstrip; a versatile mid-20th century media form. Funded by an RSE Research Network Award, his project connects archives and scholars, bringing lost histories to light. </p> </div> </div> </li> </ul> </div> </section> </main> <footer class="footer wrapper"> <section> <div class="row"> <div class="column"> <a href="https://rse.org.uk" class="logo-footer" rel="home" title="Home page | Royal Society of Edinburgh"> <svg xmlns="http://www.w3.org/2000/svg" viewBox="0 0 512 132"><path d="M47.3 17.5s33.4-.1 33.4 23.3c0 20.8-26 22.1-26 22.1s27 .7 27 19.7c0 15.2 0 13.1.1 18.9.1 3 2.9 12.4 8.1 12.4 0 0-27.8 5.6-27.8-14.2 0-19.5-1.3-22-1.3-22S58.3 66 48 62.9c0 0 11.7-9.2 12.3-22.8.7-14.7-13-22.6-13-22.6zm163.8 29.3s-2.2 13.1-13.5 17.7c11.3 4.6 13.5 17.7 13.5 17.7V46.8zM140 86.7c8.7 12.7-1.3 24.9-1.3 24.9s23.5-9.2 17.6-33.7c-.3-1.1-2-14.6-30.8-25.8-36.9-14.4-10.4-33.5-10.4-33.5s-1.2.1-3.7 1.3c0 0-32.7 16.9-9.5 43.3 8.5 9.6 29.5 12.5 38.1 23.5zm-34.9-4.5c-6.2 0-11.3 5-11.3 11.3 0 6.2 5 11.3 11.3 11.3 6.2 0 11.3-5 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