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  1. Article ; Online: Improving Health Care Transitions for Children and Youth With Special Health Care Needs.

    Okumura, Megumi J / Kuo, Dennis Z / Ware, Allysa N / Cyr, Mallory H / White, Patience H

    Academic pediatrics

    2021  Volume 22, Issue 2S, Page(s) S7–S13

    Abstract: Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve ...

    Abstract Health care transitions (HCT) from pediatric to adult health care remain a challenge for children and youth with special health care needs (CYSHCN), their families and their clinicians. While the HCT literature has expanded, gaps remain in how to improve health outcomes during transitions. HCTs broadly encompass three key domain areas: transition planning, transfer to adult health care clinicians or an adult model of care, and integration into an adult care/model of care. The CYSHCNet national research agenda development process, described in a previous article, prioritized several key research areas to address deficiencies in the HCT process. The highest priority questions identified were "What are the best models to accomplish youth-adult transition planning? How might this translate to other transitions (eg, to new clinicians, new settings, new schools, etc.)?" and "How do gaps in insurance and community supports during early adulthood effect CYSHCN health outcomes, and how can they be reduced?". Based upon these priorities, we describe the current state of transition research and recommendations for future investigation. Recommendations: The authors recommend 3 primary areas of investigation: 1) Understanding the optimal development and implementation of HCT service models in partnership with youth and families to improve transition readiness and transfer 2) Defining the process and outcome measures that capture adequacy of transition-related activities and 3) Evaluating fiscal policies that incentivize the processes of transition readiness development, transfer to adult health care services, and continuity of care within an adult health care setting. This article explores approaches within each research domain.
    MeSH term(s) Adolescent ; Adult ; Child ; Delivery of Health Care ; Humans ; Outcome Assessment, Health Care ; Patient Transfer ; Transition to Adult Care
    Language English
    Publishing date 2021-10-29
    Publishing country United States
    Document type Journal Article ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, P.H.S.
    ZDB-ID 2483385-X
    ISSN 1876-2867 ; 1876-2859
    ISSN (online) 1876-2867
    ISSN 1876-2859
    DOI 10.1016/j.acap.2021.03.014
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  2. Article ; Online: Associations Between Health Care Transition Preparation Among Youth in the U.S. and Other Components of a Well-Functioning System of Services.

    Ilango, Samhita M / Lebrun-Harris, Lydie A / Jones, Jessica R / McManus, Margaret A / Cyr, Mallory / Mann, Marie Y / McLellan, Sara Beth / White, Patience H

    The Journal of adolescent health : official publication of the Society for Adolescent Medicine

    2021  Volume 69, Issue 3, Page(s) 414–423

    Abstract: Purpose: This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/ ... ...

    Abstract Purpose: This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/continuous screening for special health care needs [SHCN], continuous/adequate health insurance, access to community-based services).
    Methods: Data came from the combined 2016-2017 National Survey of Children's Health (n = 29,617 youth ages 12-17). Parents/caregivers answered questions about their child's health care experiences, which were combined to measure receipt of HCT preparation and the other five components of a well-functioning system of services. Unadjusted and adjusted analyses were conducted to examine associations, stratified by youth with and without special health care needs (YSHCN/non-YSHCN).
    Results: About 16.7% of YSCHN and 13.9% of non-YSHCN received HCT preparation (p = .0040). Additionally, 25.3% of YSHCN and 27.3% of non-YSHCN received all five remaining components of a system of services (p = .1212). HCT preparation was positively associated with receipt of the combined five components among both YSHCN (adjusted prevalence rate ratio = 1.53, 95% confidence interval: 1.20-1.86) and non-YSHCN (adjusted prevalence rate ratio = 1.63, 95% confidence interval: 1.39-1.88). Regarding individual system of services components, early and continuous screening for SHCN was significantly associated with HCT preparation for both populations. For non-YSHCN only, having a medical home was associated with HCT preparation. The remaining three components were not associated with HCT preparation for either population after adjusting for sociodemographic characteristics.
    Conclusions: Among both YSHCN and non-YSHCN, HCT preparation is positively associated with receipt of early and continuous screening for SHCN as well as the five combined components of a well-functioning system of services.
    MeSH term(s) Adolescent ; Child ; Delivery of Health Care ; Health Services Needs and Demand ; Humans ; Insurance, Health ; Patient Transfer ; Transition to Adult Care
    Language English
    Publishing date 2021-03-10
    Publishing country United States
    Document type Journal Article ; Research Support, N.I.H., Extramural
    ZDB-ID 1063374-1
    ISSN 1879-1972 ; 1054-139X
    ISSN (online) 1879-1972
    ISSN 1054-139X
    DOI 10.1016/j.jadohealth.2021.01.006
    Database MEDical Literature Analysis and Retrieval System OnLINE

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  3. Article ; Online: Transition Planning Among US Youth With and Without Special Health Care Needs.

    Lebrun-Harris, Lydie A / McManus, Margaret A / Ilango, Samhita M / Cyr, Mallory / McLellan, Sarah Beth / Mann, Marie Y / White, Patience H

    Pediatrics

    2018  Volume 142, Issue 4

    Abstract: Background: Researchers have shown that most youth with special health care needs (YSHCN) are not receiving guidance on planning for health care transition. This study examines current transition planning among US youth with and without special health ... ...

    Abstract Background: Researchers have shown that most youth with special health care needs (YSHCN) are not receiving guidance on planning for health care transition. This study examines current transition planning among US youth with and without special health care needs (SHCN).
    Methods: The 2016 National Survey of Children's Health is nationally representative and includes 20 708 youth (12-17 years old). Parents and/or caregivers were asked if transition planning occurred, based on the following elements: (1) doctor or other health care provider (HCP) discussed the eventual shift to an HCP who cares for adults, (2) an HCP actively worked with youth to gain self-care skills or understand changes in health care at age 18, and (3) youth had time alone with an HCP during the last preventive visit. Sociodemographic and health system characteristics were assessed for associations with transition planning.
    Results: Nationally, 17% of YSHCN and 14% of youth without SHCN met the overall transition measure. Older age (15-17 years) was the only sociodemographic factor associated with meeting the overall transition measure and individual elements for YSHCN and youth without SHCN. Other sociodemographic characteristics associated with transition planning differed among the 2 populations. Receipt of care coordination and a written plan was associated with transition planning for YSHCN.
    Conclusions: This study reveals that few youth with and without SHCN receive transition planning support. It underscores the need for HCPs to work with youth independently and in collaboration with parents and/or caregivers throughout adolescence to gain self-care skills and prepare for adult-focused care.
    MeSH term(s) Adolescent ; Child ; Cross-Sectional Studies ; Disabled Children ; Female ; Health Care Surveys/methods ; Health Care Surveys/trends ; Health Personnel/trends ; Health Services Needs and Demand/trends ; Humans ; Male ; Needs Assessment/trends ; Transition to Adult Care/trends ; United States/epidemiology
    Language English
    Publishing date 2018-09-17
    Publishing country United States
    Document type Comparative Study ; Journal Article ; Research Support, U.S. Gov't, P.H.S.
    ZDB-ID 207677-9
    ISSN 1098-4275 ; 0031-4005
    ISSN (online) 1098-4275
    ISSN 0031-4005
    DOI 10.1542/peds.2018-0194
    Database MEDical Literature Analysis and Retrieval System OnLINE

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