Healthcare and guidelines: A population-based survey of recorded medical problems and health surveillance for people with Down syndrome

Määttä, Tuomo; Määttä, Joonas; Tervo-Määttä, Tuula; Taanila, Anja; Kaski, Markus; Iivanainen, Matti

doi:10.1080/13668250.2011.570253

Cited by 63 publications

(44 citation statements)

References 38 publications

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“…The prevalence of depression in our cohort was similar to that reported in previous studies of people with Down syndrome (16% for depression and/or anxiety;[41] 11% for one or more episodes of depressive illness;[42] and 22% for emotional problems[32]) but higher than reported among adults with Down syndrome based on clinical diagnostic criteria (3%) [43]. In our study mental health conditions were reported to have an adverse impact on employment as well as leisure and social activities among the young adults.…”

Section: Discussionsupporting

confidence: 90%

Health Conditions and Their Impact among Adolescents and Young Adults with Down Syndrome

et al. 2014

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ObjectiveTo examine the prevalence of medical conditions and use of health services among young adults with Down syndrome and describe the impact of these conditions upon their lives.MethodsUsing questionnaire data collected in 2011 from parents of young adults with Down syndrome we investigated the medical conditions experienced by their children in the previous 12 months. Univariate, linear and logistic regression analyses were performed.ResultsWe found that in addition to the conditions commonly experienced by children with Down syndrome, including eye and vision problems (affecting 73%), ear and hearing problems (affecting 45%), cardiac (affecting 25%) and respiratory problems (affecting 36%), conditions also found to be prevalent within our young adult cohort included musculoskeletal conditions (affecting 61%), body weight (affecting 57%), skin (affecting 56%) and mental health (affecting 32%) conditions and among young women menstrual conditions (affecting 58%). Few parents reported that these conditions had no impact, with common impacts related to restrictions in opportunities to participate in employment and community leisure activities for the young people, as well as safety concerns.ConclusionThere is the need to monitor, screen and provide appropriate strategies such as through the promotion of healthy lifestyles to prevent the development of comorbidities in young people with Down syndrome and, where present, to reduce their impact.

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Section: Discussionsupporting

confidence: 90%

Health Conditions and Their Impact among Adolescents and Young Adults with Down Syndrome

et al. 2014

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“…A number of studies have highlighted the importance of education and medical care in the development of people with DS (Buckley, Bird, Sacks, & Archer, 2006;Couzens, Haynes, & Cuskelly, 2012;Hanson, 2003). Although comprehensive health assessment programs have improved health outcomes among people with intellectual disability (Cooper et al, 2006), many adults with DS still do not have access to regular health care, despite the high frequency of medical complications (Henderson, Lynch, Wilkinson, & Hunter, 2007;Määttä et al, 2011). The variability we found can also be attributed to epigenetic factors, such as allelic variation and genomic imbalance (Lott & Dierssen, 2010); and we can surmise that the complexity and variability of geneenvironment interactions play a decisive role in cognitive changes.…”

Section: Profile Variabilitymentioning

confidence: 98%

Variability of the Aging Process in Dementia-Free Adults With Down Syndrome

Tsao¹,

Kindelberger²,

Fréminville³

et al. 2015

American Journal on Intellectual and Developmental Disabilities

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The aim of this cross-sectional study was to analyze the typical aging process in adults with Down syndrome, focusing on its variability. The sample comprised 120 adults with Down syndrome who were free of dementia. Ages ranged from 20 to 69 years. Each participant was assessed on cognitive functioning and social adaptation, and was checked for the presence of psychopathological disorders. Results revealed an age-related deterioration in both cognitive and social adaptation skills, the extent of this decline depending on the dimension under scrutiny, and interindividual variability in aging profiles.

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“…Earlier studies were often based on retrospective chart reviews, which excludes complaints for which no medical attention was sought by the parents [5,7,15]. Also, there have been many studies based on a single questionnaire where parents were asked if complaints were present in the past year(s), which leads to recall bias [9,11,16,21].…”

Section: Discussionmentioning

confidence: 99%

“…In a retrospective Finnish chart study, up to 40% of children and young adults (aged <30 years) with DS have had at least one pneumonia, partly caused by aspiration [15]. Schieve et al report that 27.6% of children with DS compared to 17.5% of children without DS or other cause of mental retardation had symptoms of head/chest cold in the 2 weeks prior to the conduction of the survey [9].…”

Section: Introductionmentioning

confidence: 99%

Epidemiology of respiratory symptoms in children with Down syndrome: a nationwide prospective web-based parent-reported study

2014

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BackgroundChildren with Down syndrome suffer from recurrent respiratory tract and ear-nose-throat complaints that influence daily life. Little is known about the frequency of these complaints, as well as their relation to co-morbidity and ageing.Methods/designA prospective web-based parent-reported observational study was designed for parents having a child with Down syndrome (age 0 to 18 years). Upon registration, parents receive an email containing a link to a weekly questionnaire regarding respiratory symptoms during two consecutive years. Additionally, at the beginning, after one year and at the end of the study they receive an extended questionnaire concerning baseline data, daily activities and medical history. The data will be compared to the ongoing “child-is-ill” study, which collects weekly data in an identical fashion in children that are considered to be “normal as to being ill” by their parents.DiscussionThis study will provide important data on the epidemiology of respiratory symptoms in children with Down syndrome, which will be useful for further studies on treatment options. Also, this study will gain insight in healthcare usage and work absence due to the child’s illnesses.

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Healthcare and guidelines: A population-based survey of recorded medical problems and health surveillance for people with Down syndrome

Cited by 63 publications

References 38 publications

Health Conditions and Their Impact among Adolescents and Young Adults with Down Syndrome

Health Conditions and Their Impact among Adolescents and Young Adults with Down Syndrome

Variability of the Aging Process in Dementia-Free Adults With Down Syndrome

Epidemiology of respiratory symptoms in children with Down syndrome: a nationwide prospective web-based parent-reported study

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