{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,8]],"date-time":"2026-09-08T18:55:50Z","timestamp":1788893750472,"version":"build-2803163510"},"reference-count":38,"publisher":"American Medical Association (AMA)","issue":"1","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JAMA Netw Open"],"abstract":"\n Importance<\/jats:title>\n Breast cancer\u2013specific mortality is increased among women with intellectual disability (ID), and knowledge about participation in breast cancer screening in this group is needed.<\/jats:p>\n <\/jats:sec>\n \n Objective<\/jats:title>\n To examine participation in the Danish national breast cancer screening program among women with ID compared with women without ID.<\/jats:p>\n <\/jats:sec>\n \n Design, Setting, and Participants<\/jats:title>\n This dynamic population-based cohort study assessed participation in the Danish national breast cancer screening program initiated in 2007, targeting women aged 50 to 69 years with a screening interval of 2 years. In all, 6357 women with ID born between 1941 and 1967 and eligible for the screening program were identified in national registers. Women entered the study between January 1, 2007, and December 31, 2017. Subsequently, 273 women were excluded due to a history of carcinoma in situ or breast cancer, and 489 due to registration errors in registers. Each woman was individually age-matched with 10 women without ID (reference group). All women were followed up until March 31, 2021, or censoring (due to death, carcinoma in situ, or breast cancer). Data were analyzed from December 1, 2021, to June 31, 2022.<\/jats:p>\n <\/jats:sec>\n \n Exposures<\/jats:title>\n Intellectual disability was defined as being registered with an ID diagnosis or a diagnosis most likely leading to ID or residing at an institution for persons with ID.<\/jats:p>\n <\/jats:sec>\n \n Main Outcomes and Measures<\/jats:title>\n Participation in breast cancer screening (fully, partly, and never).<\/jats:p>\n <\/jats:sec>\n \n Results<\/jats:title>\n A total of 5595 women with ID and 49\u202f423 age-matched women in the reference group were included in the analysis. Of these, 2747 women with ID (49%) and 24 723 in the reference group (50%) were 50 years of age at study entry; for those older than 50 years, the median age was 51 years (IQR, 50-58 years) in both groups. In all, 1425 women with ID (25%) were fully screened according to guidelines for the Danish breast cancer screening program compared with 30 480 women in the reference group (62%). Women with ID had nearly 5 times higher odds of never being screened compared with the reference group (odds ratio, 4.90 [95% CI, 4.60-5.22]). In all, 2498 women with ID (45%) and 6573 in the reference group (13%) were never screened. The proportion of never-screened women increased with severity of ID, from 834 of 2287 (36%) among women with mild ID to 173 of 212 (82%) among women with profound ID.<\/jats:p>\n <\/jats:sec>\n \n Conclusions and Relevance<\/jats:title>\n The findings of this cohort study suggest that women with ID are markedly less likely to participate in breast cancer screening compared with women without ID. These findings further suggest a need for tailored guidelines and approaches for breast cancer screening in this group of women.<\/jats:p>\n <\/jats:sec>","DOI":"10.1001\/jamanetworkopen.2022.48980","type":"journal-article","created":{"date-parts":[[2023,1,3]],"date-time":"2023-01-03T11:05:34Z","timestamp":1672743934000},"page":"e2248980","source":"Crossref","is-referenced-by-count":34,"title":["Breast Cancer Screening Among Women With Intellectual Disability in Denmark"],"prefix":"10.1001","volume":"6","author":[{"given":"Trine Allerslev","family":"Horsb\u00f8l","sequence":"first","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Susan Ish\u00f8y","family":"Michelsen","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tina Harmer","family":"Lassen","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Knud","family":"Juel","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janne","family":"Bigaard","sequence":"additional","affiliation":[{"name":"Prevention and Information, Danish Cancer Society, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christina Engel","family":"Hoei-Hansen","sequence":"additional","affiliation":[{"name":"Department of Paediatrics and Adolescent Medicine, Copenhagen University Hospital\u2013Rigshospitalet, Copenhagen, Denmark"},{"name":"Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ilse","family":"Vejborg","sequence":"additional","affiliation":[{"name":"Department of Breast Examinations, Copenhagen University Hospital Herlev Gentofte, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Lau Caspar","family":"Thygesen","sequence":"additional","affiliation":[{"name":"National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"10","published-online":{"date-parts":[[2023,1,3]]},"reference":[{"issue":"6","key":"zoi221386r1","doi-asserted-by":"publisher","first-page":"1267","DOI":"10.1002\/cncr.v128.6","article-title":"Cancer-related mortality among people with intellectual disabilities: a nationwide population-based cohort study.","volume":"128","author":"Cuypers","year":"2022","journal-title":"Cancer"},{"issue":"6","key":"zoi221386r2","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2021.13014","article-title":"Association of intellectual disability with all-cause and cause-specific mortality in Sweden.","volume":"4","author":"Hirvikoski","year":"2021","journal-title":"JAMA Netw Open"},{"issue":"7","key":"zoi221386r3","doi-asserted-by":"publisher","first-page":"1191","DOI":"10.1038\/s41416-020-0968-6","article-title":"Impact of mammographic screening and advanced cancer definition on the percentage of advanced-stage cancers in a steady-state breast screening programme in the Netherlands.","volume":"123","author":"de Munck","year":"2020","journal-title":"Br J Cancer"},{"key":"zoi221386r4","doi-asserted-by":"publisher","first-page":"14","DOI":"10.1258\/jms.2012.012078","article-title":"The impact of mammographic screening on breast cancer mortality in Europe: a review of observational studies.","volume":"19","author":"Broeders","year":"2012","journal-title":"J Med Screen"},{"issue":"7","key":"zoi221386r5","doi-asserted-by":"publisher","first-page":"2737","DOI":"10.1007\/s00330-016-4612-z","article-title":"Position paper on screening for breast cancer by the European Society of Breast Imaging (EUSOBI) and 30 national breast radiology bodies from Austria, Belgium, Bosnia and Herzegovina, Bulgaria, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Italy, Israel, Lithuania, Moldova, the Netherlands, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Spain, Sweden, Switzerland and Turkey.","volume":"27","author":"Sardanelli","year":"2017","journal-title":"Eur Radiol"},{"issue":"4","key":"zoi221386r6","doi-asserted-by":"publisher","first-page":"433","DOI":"10.3109\/0284186X.2013.874573","article-title":"Position paper: breast cancer screening, diagnosis, and treatment in Denmark.","volume":"53","author":"Christiansen","year":"2014","journal-title":"Acta Oncol"},{"issue":"7485","key":"zoi221386r7","doi-asserted-by":"publisher","first-page":"220","DOI":"10.1136\/bmj.38313.639236.82","article-title":"Breast cancer mortality in Copenhagen after introduction of mammography screening: cohort study.","volume":"330","author":"Olsen","year":"2005","journal-title":"BMJ"},{"key":"zoi221386r8","doi-asserted-by":"publisher","first-page":"167","DOI":"10.1016\/j.ypmed.2017.04.034","article-title":"A longitudinal assessment of adherence to breast and cervical cancer screening recommendations among women with and without intellectual disability.","volume":"100","author":"Xu","year":"2017","journal-title":"Prev Med"},{"issue":"5","key":"zoi221386r9","doi-asserted-by":"publisher","first-page":"507","DOI":"10.1016\/S0091-7435(03)00177-4","article-title":"Breast cancer and the uptake of mammography screening services by women with intellectual disabilities.","volume":"37","author":"Sullivan","year":"2003","journal-title":"Prev Med"},{"issue":"7","key":"zoi221386r10","doi-asserted-by":"publisher","first-page":"1522","DOI":"10.1002\/cncr.v126.7","article-title":"Breast cancer screening disparities between women with and without disabilities: a national database study in South Korea.","volume":"126","author":"Shin","year":"2020","journal-title":"Cancer"},{"issue":"12","key":"zoi221386r11","doi-asserted-by":"publisher","first-page":"3372","DOI":"10.1016\/j.ridd.2014.08.019","article-title":"Factors influencing the mammography utilization among Taiwanese women with intellectual disabilities, a nationwide population-based study.","volume":"35","author":"Lai","year":"2014","journal-title":"Res Dev Disabil"},{"issue":"3","key":"zoi221386r12","doi-asserted-by":"publisher","first-page":"266","DOI":"10.1111\/jir.v61.3","article-title":"Breast cancer and screening in persons with an intellectual disability living in institutions in France.","volume":"61","author":"Tr\u00e9tarre","year":"2017","journal-title":"J Intellect Disabil Res"},{"issue":"4","key":"zoi221386r13","doi-asserted-by":"publisher","first-page":"418","DOI":"10.1016\/j.phr.2004.05.006","article-title":"Health disparities among adults with developmental disabilities, adults with other disabilities, and adults not reporting disability in North Carolina.","volume":"119","author":"Havercamp","year":"2004","journal-title":"Public Health Rep"},{"issue":"5","key":"zoi221386r14","doi-asserted-by":"publisher","first-page":"478","DOI":"10.1111\/jir.12035","article-title":"Are cervical and breast cancer screening programmes equitable? the case of women with intellectual and developmental disabilities.","volume":"57","author":"Cobigo","year":"2013","journal-title":"J Intellect Disabil Res"},{"issue":"1","key":"zoi221386r15","doi-asserted-by":"publisher","first-page":"36","DOI":"10.1016\/j.dhjo.2012.08.004","article-title":"Receipt of mammography among women with intellectual disabilities: medical record data indicate substantial disparities for African American women.","volume":"6","author":"Parish","year":"2013","journal-title":"Disabil Health J"},{"key":"zoi221386r16","doi-asserted-by":"publisher","first-page":"563","DOI":"10.2147\/CLEP","article-title":"The Danish health care system and epidemiological research: from health care contacts to database records.","volume":"11","author":"Schmidt","year":"2019","journal-title":"Clin Epidemiol"},{"key":"zoi221386r18","doi-asserted-by":"publisher","first-page":"798","DOI":"10.1186\/s12885-015-1829-1","article-title":"Non-participation in breast cancer screening for women with chronic diseases and multimorbidity: a population-based cohort study.","volume":"15","author":"Jensen","year":"2015","journal-title":"BMC Cancer"},{"key":"zoi221386r19","doi-asserted-by":"publisher","first-page":"509","DOI":"10.2147\/CLEP.S250418","article-title":"Morbidity as a predictor for participation in the Danish national mammography screening program: a cross-sectional study.","volume":"12","author":"Viuff","year":"2020","journal-title":"Clin Epidemiol"},{"key":"zoi221386r20","doi-asserted-by":"publisher","first-page":"518","DOI":"10.1186\/1471-2407-12-518","article-title":"Identifying specific non-attending groups in breast cancer screening\u2014population-based registry study of participation and socio-demography.","volume":"12","author":"Jensen","year":"2012","journal-title":"BMC Cancer"},{"issue":"9920","key":"zoi221386r21","doi-asserted-by":"publisher","first-page":"889","DOI":"10.1016\/S0140-6736(13)62026-7","article-title":"The confidential inquiry into premature deaths of people with intellectual disabilities in the UK: a population-based study.","volume":"383","author":"Heslop","year":"2014","journal-title":"Lancet"},{"issue":"7","key":"zoi221386r22","doi-asserted-by":"publisher","first-page":"8","DOI":"10.1177\/1403494811409654","article-title":"Danish population-based registers for public health and health-related welfare research: introduction to the supplement.","volume":"39","author":"Thygesen","year":"2011","journal-title":"Scand J Public Health"},{"issue":"4","key":"zoi221386r23","doi-asserted-by":"publisher","first-page":"333","DOI":"10.1177\/1403494815575193","article-title":"Danish nationwide registers for public health and health-related research.","volume":"43","author":"Erlangsen","year":"2015","journal-title":"Scand J Public Health"},{"issue":"6","key":"zoi221386r24","first-page":"C4287","article-title":"Mammography screening in Denmark.","volume":"58","author":"Vejborg","year":"2011","journal-title":"Dan Med Bull"},{"issue":"1","key":"zoi221386r25","doi-asserted-by":"publisher","first-page":"897","DOI":"10.1186\/s12885-017-3929-6","article-title":"Outcome of breast cancer screening in Denmark.","volume":"17","author":"Lynge","year":"2017","journal-title":"BMC Cancer"},{"issue":"7","key":"zoi221386r26","doi-asserted-by":"publisher","first-page":"30","DOI":"10.1177\/1403494811401482","article-title":"The Danish National Patient Register.","volume":"39","author":"Lynge","year":"2011","journal-title":"Scand J Public Health"},{"issue":"7","key":"zoi221386r27","doi-asserted-by":"publisher","first-page":"54","DOI":"10.1177\/1403494810395825","article-title":"The Danish Psychiatric Central Research Register.","volume":"39","author":"Mors","year":"2011","journal-title":"Scand J Public Health"},{"issue":"3","key":"zoi221386r28","first-page":"161","article-title":"The Danish Cerebral Palsy Registry: a registry on a specific impairment.","volume":"48","author":"Uldall","year":"2001","journal-title":"Dan Med Bull"},{"issue":"7","key":"zoi221386r29","doi-asserted-by":"publisher","first-page":"22","DOI":"10.1177\/1403494810387965","article-title":"The Danish Civil Registration System.","volume":"39","author":"Pedersen","year":"2011","journal-title":"Scand J Public Health"},{"key":"zoi221386r30","doi-asserted-by":"publisher","first-page":"81","DOI":"10.2147\/CLEP","article-title":"Existing data sources for clinical epidemiology: the Danish Quality Database of Mammography Screening.","volume":"5","author":"Langagergaard","year":"2013","journal-title":"Clin Epidemiol"},{"issue":"5","key":"zoi221386r31","doi-asserted-by":"publisher","first-page":"373","DOI":"10.1016\/0021-9681(87)90171-8","article-title":"A new method of classifying prognostic comorbidity in longitudinal studies: development and validation.","volume":"40","author":"Charlson","year":"1987","journal-title":"J Chronic Dis"},{"issue":"3","key":"zoi221386r32","doi-asserted-by":"publisher","first-page":"221","DOI":"10.1016\/S0895-4356(02)00585-1","article-title":"How to measure comorbidity: a critical review of available methods.","volume":"56","author":"de Groot","year":"2003","journal-title":"J Clin Epidemiol"},{"key":"zoi221386r33","doi-asserted-by":"publisher","first-page":"83","DOI":"10.1186\/1471-2288-11-83","article-title":"The predictive value of ICD-10 diagnostic coding used to assess Charlson Comorbidity Index conditions in the population-based Danish National Registry of Patients.","volume":"11","author":"Thygesen","year":"2011","journal-title":"BMC Med Res Methodol"},{"issue":"7","key":"zoi221386r34","doi-asserted-by":"publisher","first-page":"91","DOI":"10.1177\/1403494810394715","article-title":"Danish Education Registers.","volume":"39","author":"Jensen","year":"2011","journal-title":"Scand J Public Health"},{"issue":"8","key":"zoi221386r35","doi-asserted-by":"publisher","first-page":"1290","DOI":"10.1080\/09687599.2019.1680348","article-title":"Barriers and facilitators to mammography among women with intellectual disabilities: a qualitative approach.","volume":"35","author":"Arana-Chicas","year":"2020","journal-title":"Disabil Soc"},{"key":"zoi221386r36","doi-asserted-by":"publisher","DOI":"10.1016\/j.canep.2021.102084","article-title":"A systematic review of the barriers and facilitators influencing the cancer screening behaviour among people with intellectual disabilities.","volume":"76","author":"Chan","year":"2022","journal-title":"Cancer Epidemiol"},{"issue":"4","key":"zoi221386r37","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejmg.2019.103783","article-title":"Cancer screening in adults with Down syndrome, a proposal.","volume":"63","author":"Rethor\u00e9","year":"2020","journal-title":"Eur J Med Genet"},{"issue":"1","key":"zoi221386r38","doi-asserted-by":"publisher","first-page":"62","DOI":"10.1352\/1934-9556-51.01.062","article-title":"Family caregivers\u2019 perspectives on barriers and facilitators of cervical and breast cancer screening for women with intellectual disability.","volume":"51","author":"Swaine","year":"2013","journal-title":"Intellect Dev Disabil"},{"key":"zoi221386r17","unstructured":"Styregruppen for Dansk Kvalitetsdatabase. \u00c5rsrapport 2021. Sjette nationale screeningsrunde [in Danish]. August 2021. Accessed October 8, 2022. https:\/\/www.sundhed.dk\/content\/cms\/78\/4678_dkms_rapport2021_offentlig_version.pdf"}],"container-title":["JAMA Network Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/articlepdf\/2799940\/horsbl_2023_oi_221386_1671205594.96815.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,1,3]],"date-time":"2023-01-03T11:05:39Z","timestamp":1672743939000},"score":1,"resource":{"primary":{"URL":"https:\/\/jamanetwork.com\/journals\/jamanetworkopen\/fullarticle\/2799940"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,1,3]]},"references-count":38,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2023,1,3]]}},"URL":"https:\/\/doi.org\/10.1001\/jamanetworkopen.2022.48980","relation":{},"ISSN":["2574-3805"],"issn-type":[{"value":"2574-3805","type":"electronic"}],"subject":[],"published":{"date-parts":[[2023,1,3]]}}}