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The guidelines were developed to avoid unnecessary suffering from preventable conditions. The aims of the study were to investigate 1) planned health care visits in relation to the co-morbidities described in specific medical guidelines as a measure of adherence, 2) unplanned health care visits as a measure of potentially unmet health care needs and 3) gender differences in health care utilisation among older people with DS.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>This register-based study includes people with DS (<jats:italic>n<\/jats:italic>\u2009=\u2009472) from a Swedish national cohort of people with intellectual disability (<jats:italic>n<\/jats:italic>\u2009=\u20097936), aged 55\u2009years or more, and with at least one support according to the disability law, in 2012. Data on inpatient and outpatient specialist health care utilisation were collected from the National Patient Register for 2002\u20132012.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>A total of 3854 inpatient and outpatient specialist health care visits were recorded during the 11\u2009years, of which 54.6% (<jats:italic>n<\/jats:italic>\u2009=\u20092103) were planned, 44.0% (<jats:italic>n<\/jats:italic>\u2009=\u20091695) unplanned and 1.4% (<jats:italic>n<\/jats:italic>\u2009=\u200956) lacked information. More than half of the visits, 67.0% (<jats:italic>n<\/jats:italic>\u2009=\u20092582) were outpatient health care thus inpatient 33% (<jats:italic>n<\/jats:italic>\u2009=\u20091272). Most planned visits (29.4%, <jats:italic>n<\/jats:italic>\u2009=\u2009618) were to an ophthalmology clinic, and most unplanned visits to an internal medicine clinic (36.6%, <jats:italic>n<\/jats:italic>\u2009=\u2009621). The most common cause for planned visits was cataract, found at least once for 32.8% in this cohort, followed by arthrosis (8.9%), epilepsy (8.9%) and dementia (6.6%). Pneumonia, pain, fractures and epilepsy each accounted for at least one unplanned visit for approximately one-fourth of the population (27.1, 26.9, 26.3 and 19.7% respectively). Men and women had similar numbers of unplanned visits. However, women were more likely to have visits for epilepsy or fractures, and men more likely for pneumonia.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>Increased awareness of existing specific medical guidelines for people with DS is vital for preventive measures. The relatively few planned health care visits according to the medical guidelines together with a high number of unplanned visits caused by conditions which potentially can be prevented suggest a need of improved adherence to medical guidelines.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s12913-020-05800-7","type":"journal-article","created":{"date-parts":[[2020,10,15]],"date-time":"2020-10-15T09:02:47Z","timestamp":1602752567000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":11,"title":["Health care utilisation among older people with Down syndrome compared to specific medical guidelines for health surveillance: a Swedish national register study"],"prefix":"10.1186","volume":"20","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6230-7583","authenticated-orcid":false,"given":"G.","family":"Ahlstr\u00f6m","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Axmon","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Sandberg","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"E.","family":"Flygare Wall\u00e9n","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,10,15]]},"reference":[{"issue":"4","key":"5800_CR1","doi-asserted-by":"publisher","first-page":"642","DOI":"10.1002\/ajmg.a.35706","volume":"161A","author":"A Englund","year":"2013","unstructured":"Englund A, Jonsson B, Zander CS, Gustafsson J, Anneren G. 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No. 2013\/15). The government authorities responsible for the national registers used in this study do not provide personal identification numbers to researchers for research studies. This meant that it was no possible to obtain informed written consent from the participants in this study. Instead, the Ethical Review Board took its decision based on an active refusal from the participants described as follows. According to the demands from the Ethical Review Board, the information about the planned study and how to withdraw from the study was advertised in two major newspapers in Sweden. One of these was a widespread national public newspaper and the other a national newspaper \u201cUnik\u201d distributed by the Swedish National Association for Persons with Intellectual Disability (FUB) and supporting members.In the next step, permission was needed to access the data from the two register holders. The National Board of Health and Welfare, and Statistics Sweden each performed separate secrecy reviews in 2014 before providing access to the data. All analyses were performed using anonymised datasets.The authors assert that all procedures contributing to this work complied with the ethical standards of the relevant national and institutional committees on human experimentation and with the revised version of the Helsinki Declaration from 2008.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"949"}}