Health Care Needs of Children With Down Syndrome and Impact of Health System Performance on Children and Their Families

Phelps, Randall A.; Pinter, Joseph D.; Lollar, Donald J.; Medlen, Joan Guthrie; Bethell, Christina

doi:10.1097/dbp.0b013e3182452dd8

Cited by 44 publications

(56 citation statements)

References 18 publications

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“…Together with data from several studies showing that individuals with DS are happy with their lives and have high self-esteem 33,34 , this undermines the assumption of individual suffering that is foundational to the medical model of disability from which the pursuit of a cure for DS has evolved 20 . Though families that include a child with DS face unique challenges, including increased emotional, physical, and financial demands that can have a profound impact on the functioning and well-being of the family 32,35,36 , parents in this study asserted that there should be a focus on changing negative societal attitudes and increasing social infrastructure to properly support individuals with DS and their families, rather than trying to change individuals with DS. This position is solidly in line with the social model of disability, which, in contrast to the medical model, suggests that barriers in society contribute significantly to difficulties experienced by those with DS 27 .…”

Section: Discussionmentioning

confidence: 99%

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A ‘cure’ for Down syndrome: what do parents want?

et al. 2014

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Recent advancements in molecular genetics raise the possibility that therapeutics or a "cure" for Down syndrome (DS) may become available. However, there are no data regarding how parents of children with DS perceive the possibility of mitigating specific manifestations such as the intellectual disability (ID) associated with DS, or curing the condition entirely. To explore these issues, we distributed a questionnaire to members of the Lower Mainland Down Syndrome Society in British Columbia, Canada. Questionnaires were completed by 101 parents (response rate=41%). A majority (61%) viewed the possibility of reversing ID in DS positively, but only 41% said that they would "cure" their child of DS if it were possible. Twenty-seven percent of respondents said they would not "cure" their child, and 32% were unsure if they would "cure" their child. The most commonly cited motivation for opting for a "cure" was to increase their child's independence. However, parental attitudes' towards a "cure" for DS were complex, affected by ethical issues, perceived societal values, and pragmatic factors such as the age of the individual and long-term care-giving burden. These findings could be used by healthcare professionals supporting families who include a member with DS and to direct future research.

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Section: Discussionmentioning

confidence: 99%

“…Learning styles & communication, including cognitive function 36 (36) "I would be interested in research to find more effective ways to teach and support people with Down syndrome…We know that they can and do learn. We just need to find the best ways to do that.…”

Section: Area Of Research N (%) Illustrative Quotementioning

confidence: 99%

A ‘cure’ for Down syndrome: what do parents want?

et al. 2014

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“…Moreover, the indicators found for the care for people with ID barely address medical aspects. Generally, people with DS and people with ID have similar health needs [4], which may imply that the identified quality indicators would be applicable in DS care as well. However, people with DS usually have more and many specific comorbidities compared to the general population of people with ID [4].…”

Section: Discussionmentioning

confidence: 99%

“…Generally, people with DS and people with ID have similar health needs [4], which may imply that the identified quality indicators would be applicable in DS care as well. However, people with DS usually have more and many specific comorbidities compared to the general population of people with ID [4]. This urges the need for both medical care that is specifically tailored to the healthcare needs of people with DS and DS specific indicators, which can contribute to the quality of life of people with DS [6].…”

Section: Discussionmentioning

confidence: 99%

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In search of quality indicators for Down syndrome healthcare: a scoping review

Mareeuw

Hollegien

Coppus

et al. 2017

BMC Health Serv Res

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BackgroundThe medical care chain around Down syndrome (DS) is complex, with many multidisciplinary challenges. The current quality of care is unknown. Outcome-oriented quality indicators have the potential to improve medical practice and evaluate whether innovations are successful. This is particularly interesting for the evolving care for people with DS and intellectual disabilities (ID). The aim of this study was to identify existing indicators for medical DS care, by reviewing the literature.MethodsWe systematically searched six databases (PubMed, EMBASE, Web of Science, CINAHL, PsycINFO, Google Scholar) for studies concerning the development and implementation of quality indicators for DS and/or ID care, published until February 1st 2015. The scoping review method was used, including systematic data extraction and stakeholder consultation.ResultsWe identified 13 studies concerning quality indicators for ID care that obtained data originating from questionnaires (patient/family/staff), medical files and/or national databases. We did not find any indicator sets specifically for DS care. Consulted stakeholders did not come up with additional indicator sets. Existing indicators for ID care predominantly focus on support services. Indicators in care for people with ID targeting medical care are scarce. Of the 70 indicators within the 13 indicator sets, 10% are structure indicators, 34% process, 32% outcome and 24% mixed. Ten of the 13 sets include indicators on the WHO quality dimensions ‘patient-centeredness’, ‘effectiveness’ and ‘efficiency’ of care. ‘Accessibility’ is covered by nine sets, ‘equitability’ by six, and ‘safety’ by four. Most studies developed indicators in a multidisciplinary manner in a joint effort with all relevant stakeholders; some used focus groups to include people with ID.ConclusionTo our knowledge, this is the first review that searched for studies on quality indicators in DS care. Hence, the study contributes to existing knowledge on DS care as well as on measuring quality of care. Future research should address the development of a compact set of quality indicators for the DS care chain as a whole. Indicators should preferably be patient-centred and outcome-oriented, including user perspectives, while developed in a multidisciplinary way to achieve successful implementation.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2228-x) contains supplementary material, which is available to authorized users.

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Inpatient Growth and Resource Use in 28 Children's Hospitals

Berry¹,

Hall²,

Hall³

et al. 2013

JAMA Pediatr

260

184

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Objective To compare inpatient resource use trends for healthy children and children with chronic health conditions of varying degrees of medical complexity. Design Retrospective cohort analysis. Setting Twenty-eight US children’s hospitals. Patients A total of 1 526 051 unique patients hospitalized from January 1, 2004, through December 31, 2009, who were assigned to 1 of 5 chronic condition groups using 3M’s Clinical Risk Group software. Intervention None. Main Outcome Measures Trends in the number of patients, hospitalizations, hospital days, and charges analyzed with linear regression. Results Between 2004 and 2009, hospitals experienced a greater increase in the number of children hospitalized with vs without a chronic condition (19.2% vs 13.7% cumulative increase, P < .001). The greatest cumulative increase (32.5%) was attributable to children with a significant chronic condition affecting 2 or more body systems, who accounted for 19.2% (n=63 203) of patients, 27.2% (n=111 685) of hospital discharges, 48.9% (n=1.1 million) of hospital days, and 53.2% ($9.2 billion) of hospital charges in 2009. These children had a higher percentage of Medicaid use (56.5% vs 49.7%; P<.001) compared with children without a chronic condition. Cerebral palsy (9179 [14.6%]) and asthma (13 708 [21.8%]) were the most common primary diagnosis and comorbidity, respectively, observed among these patients. Conclusions Patients with a chronic condition increasingly used more resources in a group of children’s hospitals than patients without a chronic condition. The greatest growth was observed in hospitalized children with chronic conditions affecting 2 or more body systems. Children’s hospitals must ensure that their inpatient care systems and payment structures are equipped to meet the protean needs of this important population of children.

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Health Care Needs of Children With Down Syndrome and Impact of Health System Performance on Children and Their Families

Abstract: In this study, the families of children with DS, and ID generally, are burdened disproportionately when compared with other CYSHCN, reflecting the combination of impairments intrinsic to DS and ID and impacts of suboptimal medical care coordination and social support.

Cited by 44 publications

References 18 publications

A ‘cure’ for Down syndrome: what do parents want?

A ‘cure’ for Down syndrome: what do parents want?

In search of quality indicators for Down syndrome healthcare: a scoping review

Inpatient Growth and Resource Use in 28 Children's Hospitals

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