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Social conditions for people with Down syndrome: A register‐based cohort study in Denmark
Author(s) -
Zhu Jin Liang,
Obel Carsten,
Hasle Henrik,
Rasmussen Sonja A.,
Li Jiong,
Olsen Jørn
Publication year - 2014
Publication title -
american journal of medical genetics part a
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.064
H-Index - 112
eISSN - 1552-4833
pISSN - 1552-4825
DOI - 10.1002/ajmg.a.36272
Subject(s) - cohort , danish , down syndrome , marital status , demography , cohort study , medicine , government (linguistics) , trisomy , gerontology , psychology , psychiatry , population , sociology , pathology , biology , genetics , philosophy , linguistics
Today, most persons with Down syndrome (DS) survive into middle age, but information on their social conditions as adults is limited. We addressed this knowledge gap using data from national registers in Denmark. We identified a national cohort of 1,998 persons with DS who were born between 1968 and 2007 (1,852 with standard trisomy 21, 80 with Robertsonian translocations and 66 with mosaicism) using the Danish Cytogenetic Register. We followed this cohort from 1980 to 2007. Information on social conditions (education, employment, source of income, marital status, etc.) was obtained by linkages to national registers, including the Integrated Database for Longitudinal Labor Market Research. For those aged 18 and older, more than 80% of persons with DS attended 10 years of primary school, with about 2% completing secondary or post‐secondary education. About 4% obtained a full‐time job, whereas the remaining mainly received public support from the government. Only a few (1–2%) of persons with DS were married or had a child. No significant differences in these social conditions were seen between males and females. More persons with mosaic DS attended secondary or post‐secondary education, had a full‐time job, were married, or had a child (18%, 28%, 15%, and 7%, respectively), compared with persons with standard DS (1%, 2%, 1%, and 1%, respectively). These data may provide families with better insight into social conditions and society with a better understanding of the social support needed for persons with DS. © 2013 Wiley Periodicals, Inc.