Disparities in Access to Healthcare Transition Services for Adolescents with Down Syndrome

Nugent, James T; Gorman, Gregory; Erdie-Lalena, Christine

doi:10.1016/j.jpeds.2018.01.072

Cited by 24 publications

(47 citation statements)

References 34 publications

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“…Articles were evenly distributed between qualitative and quantitative study designs. Fourteen studies were qualitative [ 22 , 23 , 24 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 ], eleven were quantitative [ 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 ], and five were mixed methods [ 20 , 47 , 48 , 49 , 50 ]. Investigators in six studies completed secondary analyses, four using data from the National Survey of Children with Special Health Care Needs (NS-CSHCN) [ 51 , 52 , 53 , 54 ], one completing a chart review [ 7 ], and one using the Intellectual Disability Exploring Answers (IDEA) database [ 55 ].…”

Section: Resultsmentioning

confidence: 99%

“…Descriptive statistics were reported for all eleven quantitative studies, as well as the five mixed-methods studies [ 20 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 ]. Twelve of the studies including quantitative data completed tests of association or correlation [ 20 , 37 , 38 , 40 , 41 , 42 , 43 , 44 , 45 , 48 , 49 , 50 ]. Frequency counts were employed by five studies as part of the analysis [ 20 , 39 , 44 , 45 , 47 ].…”

Section: Resultsmentioning

confidence: 99%

“…Frequency counts were employed by five studies as part of the analysis [ 20 , 39 , 44 , 45 , 47 ]. Regression modeling was used in six studies including investigations of family adaptation [ 36 ], functioning and social support [ 38 ], care transitions [ 41 ], uncertainty and communication [ 42 ], social competence [ 43 ], and attitudes towards mHealth app usage [ 46 ].…”

Section: Resultsmentioning

confidence: 99%

“…Additionally, 26 articles contained elements of healthcare management included in care coordination in their purpose statements. These elements related to care coordination included knowledge of services [ 22 , 33 , 37 , 41 ], communication [ 30 , 42 ], access to care [ 44 ], information availability [ 24 , 26 , 34 , 52 ], engagement and advocacy [ 28 , 35 , 50 , 51 ], and utilization and availability of services [ 29 , 43 , 46 , 47 , 49 , 55 , 56 , 57 ]. There were three studies that addressed the AAP guidelines for care of a child with DS [ 7 , 39 , 45 ].…”

Section: Resultsmentioning

confidence: 99%

“…In sixteen studies investigators linked elements of healthcare utilization to care coordination [ 7 , 20 , 29 , 31 , 39 , 41 , 43 , 44 , 45 , 46 , 47 , 50 , 51 , 53 , 54 , 55 ]. The most prominent feature of utilization was the role of the medical home.…”

Section: Utilizationmentioning

confidence: 99%

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Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

et al. 2021

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Care coordination is a critical component of health management aimed at linking care providers and health-information-involved care management. Our intent in this scoping review was to identify care coordination needs of families of children with Down syndrome (DS) and the strategies they used to meet those needs, with the goal of contributing to the evidence base for developing interventions by using an mHealth application (mHealth apps) for these families. Using established guidelines for scoping reviews, we searched five databases, yielding 2149 articles. Following abstract and full-text review, we identified 38 articles meeting our inclusion criteria. Studies incorporated varied in regard to research designs, samples, measures, and analytic approaches, with only one testing an intervention by using mHealth apps. Across studies, data came from 4882 families. Common aspects of families’ care coordination needs included communication and information needs and utilization of healthcare resources. Additional themes were identified related to individual, family, and healthcare contextual factors. Authors also reported families’ recommendations for desirable characteristics of an mHealth apps that addressed the design of a personal health record, meeting age-specific information needs, and ensuring access to up-to-date information. These results will further the development of mHealth apps that are tailored to the needs of families with a child with DS.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Utilizationmentioning

confidence: 99%

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Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

et al. 2021

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Health care transition for individuals with Down syndrome: A needs assessment

VanZant

McCormick²

2021

American J of Med Genetics Pt A

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Transition to adulthood is a multifaceted process that requires integration of numerous domains within a young person's life, including their health care. For children with special health care needs, the transition process can be markedly more difficult to navigate. This is especially true for children with Down syndrome (DS) who receive fewer transition planning services. The aim of this needs assessment was to identify current trends, potential gaps, and areas for targeted intervention within the current transition landscape for individuals with DS. We utilized DS-Connect, a National Institutes of Health (NIH) funded family/self-advocate survey repository, as a platform to recruit respondents to the "Transition to Adulthood" survey. Sixty-five respondents (64 parents and 1 caregiver) completed the survey. Responses indicated that 42% of respondents reported comfort in the transition process, but 5% or less reported completing one of the core transition outcomes: transition readiness assessment, portable medical summary, or written transition plan. These findings translated across other domains of respondents' lives. While many individuals with DS and their caregivers are aware of the transition process, there appears to be a disconnect between the introduction of transition concepts and an actualization of transition outcomes necessary for success.

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Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

Varshney

Iriowen

Morrell

et al. 2022

American J of Med Genetics Pt A

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Down Syndrome (DS) is one of the most common chromosomal disorders worldwide, and people with DS experience more co-morbidities and have poorer health outcomes compared to the general population. An area that is not well understood is how patients with DS transition from pediatric to adult care, as well as the details, barriers, and difficulties of these transitions for patients. Hence, we aimed to provide a scoping review of the literature in PubMed, Scopus, and CINAHL on the topic of healthcare transitions (HCTs) for patients with DS. Findings suggest patients with DS who continued receiving care as an adult from a pediatric care provider tended to experience co-morbidities and other adverse health issues at higher rates than those who entirely switch to an adult-care team. Patients with DS were unable to undergo transition due to multiple barriers, such as low income, limited/public insurance, gender, and race. We propose potential steps for transition, which focus on ensuring early planning, communicating better, coordinating services, assessing decisionmaking capacity, and providing ongoing social and financial support. Future research must further identify and address barriers to HCTs for people with DS.

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Disparities in Access to Healthcare Transition Services for Adolescents with Down Syndrome

Cited by 24 publications

References 34 publications

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

Care Coordination Needs of Families of Children with Down Syndrome: A Scoping Review to Inform Development of mHealth Applications for Families

Health care transition for individuals with Down syndrome: A needs assessment

Disparities and outcomes of patients living with Down Syndrome undergoing healthcare transitions from pediatric to adult care: A scoping review

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