{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,29]],"date-time":"2026-07-29T05:49:20Z","timestamp":1785304160925,"version":"3.55.0"},"reference-count":15,"publisher":"Georg Thieme Verlag KG","issue":"11","license":[{"start":{"date-parts":[[2023,11,30]],"date-time":"2023-11-30T00:00:00Z","timestamp":1701302400000},"content-version":"vor","delay-in-days":29,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arq Neuropsiquiatr"],"published-print":{"date-parts":[[2023,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Background\u2003Down syndrome is the most commonly genetic cause of developmental delay and intellectual disability, affecting 1:700 live births. It is associated with heart disease and recurrent infections, among other complications that greatly impair the patient's quality of life.<\/jats:p><jats:p>\n          Objective\u2003To evaluate the major factors associated with quality of life in a cohort of patients with Down syndrome.<\/jats:p><jats:p>\n          Methods\u2003We assessed 1,187 patients with Down syndrome, older than 4 years old, with an adaptation of the Personal Outcomes Scale validated for Portuguese language, interviewing patients, parents, and caregivers.<\/jats:p><jats:p>\n          Results\u2003A bad quality of life was reported in 56.4% of the sample. The main factors associated with better quality of life were female sex, first medical visit before 4 months old, higher parental education, a professionally active mother, and prenatal care. The main factors associated with worse quality of life were family history of alcohol abuse and psychiatric disorders and comorbidity with autism and epilepsy.<\/jats:p><jats:p>\n          Conclusion\u2003Clinical comorbidities such as autism and epilepsy carry a heavy burden among patients with Down syndrome, while factors related to family support, such as employment status and educational background of the parents, enhance quality of life. The factors associated with quality of life among patients with Down syndrome should be adequately evaluated in medical consultation and targeted in public health policies.<\/jats:p>","DOI":"10.1055\/s-0043-1777006","type":"journal-article","created":{"date-parts":[[2023,11,30]],"date-time":"2023-11-30T23:51:36Z","timestamp":1701388296000},"page":"943-948","source":"Crossref","is-referenced-by-count":7,"title":["Quality of life in Down syndrome in Brazil: a cross-sectional study"],"prefix":"10.1055","volume":"81","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-2027-7221","authenticated-orcid":false,"given":"Beatriz Elizabeth Bagatin Veleda","family":"Bermudez","sequence":"additional","affiliation":[{"name":"Universidade Federal do Paran\u00e1, Hospital das Cl\u00ednicas, Ambulat\u00f3rio da S\u00edndrome de Down, Curitiba PR, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0207-3671","authenticated-orcid":false,"given":"Gustavo Leite","family":"Franklin","sequence":"additional","affiliation":[{"name":"Pontif\u00edcia Universidade Cat\u00f3lica do Paran\u00e1, Faculdade de Medicina, Departamento de Medicina Interna, Curitiba PR, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6823-7395","authenticated-orcid":false,"given":"Camila Maciel de","family":"Oliveira","sequence":"additional","affiliation":[{"name":"Stanford University - Department of Science Behavior, Division of Sleep Medicine, Redwood City CA, United of States."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4921-2939","authenticated-orcid":false,"given":"L\u00e9o","family":"Coutinho","sequence":"additional","affiliation":[{"name":"Universidade Federal do Paran\u00e1, Programa de P\u00f3s-Gradua\u00e7\u00e3o em Medicina Interna, Curitiba PR, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6669-7312","authenticated-orcid":false,"given":"Ana Chrystina de Souza","family":"Crippa","sequence":"additional","affiliation":[{"name":"Universidade Federal do Paran\u00e1, Hospital das Cl\u00ednicas, Unidade de Neuropediatria, Curitiba PR, Brazil."}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"194","published-online":{"date-parts":[[2023,11,30]]},"reference":[{"issue":"03","key":"ref1","doi-asserted-by":"publisher","first-page":"290","DOI":"10.4045\/tidsskr.12.0390","article-title":"Health and disease in adults with Down syndrome","volume":"133","author":"E A Malt","year":"2013","journal-title":"Tidsskr Nor Laegeforen"},{"issue":"01","key":"ref2","doi-asserted-by":"publisher","first-page":"116","DOI":"10.1002\/ajmg.a.38512","article-title":"Co-occurring medical conditions in adults with Down syndrome: A systematic review toward the development of health care guidelines","volume":"176","author":"G T Capone","year":"2018","journal-title":"Am J Med Genet A"},{"issue":"10","key":"ref3","doi-asserted-by":"publisher","first-page":"1403","DOI":"10.1016\/0277-9536(95)00112-k","article-title":"The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization","volume":"41","year":"1995","journal-title":"Soc Sci Med"},{"issue":"10","key":"ref4","doi-asserted-by":"publisher","first-page":"e296","DOI":"10.1371\/journal.pmed.0040296","article-title":"The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies","volume":"4","author":"E von Elm","year":"2007","journal-title":"PLoS Med"},{"key":"ref5","volume-title":"Personal outcomes scale: Administration and standardization manual","author":"J Van Loon","year":"2009"},{"issue":"02","key":"ref6","doi-asserted-by":"publisher","first-page":"186","DOI":"10.1016\/j.ijchp.2015.11.002","article-title":"Validation of the Portuguese version of the Personal Outcomes Scale","volume":"16","author":"C Sim\u00f5es","year":"2016","journal-title":"Int J Clin Health Psychol"},{"issue":"02","key":"ref7","doi-asserted-by":"publisher","first-page":"161","DOI":"10.1097\/DBP.0000000000000385","article-title":"Qualitative Analysis of Parental Observations on Quality of Life in Australian Children with Down Syndrome","volume":"38","author":"N Murphy","year":"2017","journal-title":"J Dev Behav Pediatr"},{"issue":"03","key":"ref8","doi-asserted-by":"publisher","first-page":"183","DOI":"10.1111\/j.1365-2214.1986.tb00497.x","article-title":"Developmental profile of Down's syndrome infants receiving early intervention","volume":"12","author":"M C Piper","year":"1986","journal-title":"Child Care Health Dev"},{"issue":"05","key":"ref9","doi-asserted-by":"publisher","first-page":"1867","DOI":"10.1007\/s13524-014-0334-5","article-title":"When does time matter? 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