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.
Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, “Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home,” are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements ...
#1Reem M. Ghandour(Health Resources and Services Administration)H-Index: 25
#2Jessica R. Jones(HHS: United States Department of Health and Human Services)H-Index: 10
Last. Michael D. Kogan(HHS: United States Department of Health and Human Services)H-Index: 73
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Introduction Since 2001, the Health Resources and Services Administration’s Maternal and Child Health Bureau (HRSA MCHB) has funded and directed the National Survey of Children’s Health (NSCH) and the National Survey of Children with Special Health Care Needs (NS-CSHCN), unique sources of national and state-level data on child health and health care. Between 2012 and 2015, HRSA MCHB redesigned the surveys, combining content into a single survey, and shifting from a periodic interviewer-assisted ...
Objective: Transition research in each disease group is developing in its own "silo." A comprehensive review of barriers to transition within and across chronic illness groups is needed to facilitate information sharing and larger-scale efforts to overcome barriers and improve patient care. This study systematically reviews and identifies the barriers to transition from pediatric to adult care across pediatric illness populations. Methods: Medline, CINAHL, PsychINFO, Social Services Abstracts, W...
#2Ella Doerge(UM: University of Michigan)H-Index: 1
Last. John T. Stoffel(UM: University of Michigan)H-Index: 20
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Purpose: We examined the ambulatory health care visit use of children with spina bifida, adults who transitioned to adult care and adults who continued to seek care in a pediatric setting.Materials and Methods: We evaluated use during a 1-year period of patients with spina bifida who visited any outpatient medical clinic within an integrated health care system. Patients were categorized as pediatric (younger than 18 years) or adult (age 18 or older). Adults were divided into those who did not fu...
#1Niraj Sharma(Brigham and Women's Hospital)H-Index: 10
#2Kitty O’Hare(Brigham and Women's Hospital)H-Index: 6
Last. Megumi J. Okumura(UCSF: University of California, San Francisco)H-Index: 18
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Abstract Objective Youth with special health care needs (YSHCN) require assistance from their pediatricians to transition to adult care. There are few data on what transition resources pediatricians have. In this article we discuss whether care coordination and/or comprehensive electronic health record (CEHR) implementation are associated with improved transition processes. Methods Using the American Academy of Pediatrics Periodic Survey #79, we report whether practices generated written transit...
Objective To identify statistically significant positive outcomes in pediatric-to-adult transition studies using the triple aim framework of population health, consumer experience, and utilization and costs of care. Study design Studies published between January 1995 and April 2016 were identified using the CINAHL, Ovid MEDLINE, PubMed, Scopus, and Web of Science databases. Included studies evaluated pre-evaluation and postevaluation data, intervention and comparison groups, and randomized clini...
#1Cyd K. Eaton(UGA: University of Georgia)H-Index: 9
#2Molly Davis(UGA: University of Georgia)H-Index: 9
Last. Cynthia Suveg(UGA: University of Georgia)H-Index: 33
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Abstract Purpose This study aimed to examine differences in transition readiness, self-involvement and parental involvement in completing medical tasks, and general self-efficacy between a sample of older adolescents and young adults (AYAs) with medical conditions and a sample of healthy peers. Relations among these variables were also examined. Methods The sample included 494 AYAs (mean age = 19.30 years, standard deviation = 1.33) who reported on their levels of transition readiness, self-invo...
Discussing realistic future goals with the adolescent alone and with family, and reviewing legal aspects of health care transition (HCT), are essential steps in the transition from pediatric to adu...
#1Dava Szalda(UPenn: University of Pennsylvania)H-Index: 8
#2Lisa Piece(Children's Hospital of Philadelphia)H-Index: 1
Last. Lisa A. Schwartz(UPenn: University of Pennsylvania)H-Index: 27
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Abstract Purpose Understanding how to predict appropriate uptake of adult-oriented medical care is important for adult patients with pediatric-onset chronic health conditions with continued health vulnerability. We examined associates of engagement in adult survivors of childhood cancer following transfer to adult-oriented care. Methods Adult survivors of childhood cancer (N = 80), within 1–5 years post transfer from pediatric to adult-oriented follow-up care, completed assessments of engagement...
Last. Mary L. Zupanc(Children's Hospital of Orange County)H-Index: 24
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The child neurologist has a critical role in planning and coordinating the successful transition from the pediatric to adult health care system for youth with neurologic conditions. Leadership in appropriately planning a youth9s transition and in care coordination among health care, educational, vocational, and community services providers may assist in preventing gaps in care, delayed entry into the adult care system, and/or health crises for their adolescent patients. Youth whose neurologic co...
Last. Dava Szalda(Children's Hospital of Philadelphia)H-Index: 8
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PURPOSE Despite American Academy of Pediatrics recommendations that adolescents receive healthcare transition (HCT) services starting at age 12, few do. Electronic health record-based clinical decision support (CDS) tools are effective at promoting healthcare provider adherence to clinical guidelines. This study's purpose was to increase provider HCT services engagement through implementation of a transition-specific CDS and participation in a transition-focused Learning Collaborative (LC). DESI...
PURPOSE An emerging need to improve health care transition planning has developed worldwide as more youth with special health care needs are surviving to adulthood. Nurses have been instrumental in facilitating transition planning and supporting youth throughout this process. While various transition tools have been developed, health professionals' utilization and perception of these tools have yet to be explored. Furthermore, there are no universally-accepted documentation tools for transition ...
#2Rachel S Fisher(OSU: Oklahoma State University–Stillwater)H-Index: 2
Last. Larry L. Mullins(OSU: Oklahoma State University–Stillwater)H-Index: 41
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Objective: To examine the relative contribution of transition readiness (i.e., healthcare self-management) to health-related quality of life (HRQoL) among emerging adult (EA) college students witho...
Abstract null null Background null The aim of this study was to survey young adults who participated in either a formal or semi-formal transition program at one cystic fibrosis (CF) care center to compare their self-perceived transition related anxiety, transition readiness and satisfaction with transition teaching and timing. null null null Methods null This retrospective cohort study was conducted from 3/1/2015 to 9/30/2016. Study participants met inclusion criteria if they had a diagnosis of ...
OBJECTIVE To describe the prevalence, types, and trends over time of medical technology assistance (TA) in patients at the age of transition to adult care with childhood onset chronic conditions (COCCs) cared for at children's hospitals. PATIENTS AND METHODS In this retrospective repeated annual cross-sectional cohort study of the Pediatric Health Information Systems inpatient data, patients with at least 1 hospitalization from January 1, 2008, to December 31, 2018 with a selected COCC were incl...
Background: There is a need for medical education on health care transitions for youth with special health care needs. The Texas Transition Toolkit (the tool) supports providers through a one-stop shop for researching literature on care transitions, a catalog of care transition tools, and guides for developing care transition programs. Objective: This study aims to assess the functionality and usability of the tool with providers working with transition-aged children and youth with special healt...
PURPOSE Youths with special healthcare needs face challenges transitioning from pediatric to adult health care. Understanding possible mechanisms contributing to poor healthcare transition could improve care. This study explores associations between health literacy (HL), transition readiness, and healthcare utilization. METHODS Youths with special healthcare needs aged 12-18 years were recruited from a Medicaid accountable care organization (2012-2017). Outcome measures included transition readi...
Persons identified in early childhood as having autism spectrum disorder (autism) often have co-occurring health problems that extend into adolescence (1-3). Although only limited data exist on their health and use of health care services as they transition to adolescence, emerging data suggest that a minority of these persons receive recommended guidance* from their primary care providers (PCPs) starting at age 12 years to ensure a planned transition from pediatric to adult health care (4,5). T...
Abstract Purpose The aim of this study was to establish content validity of a developmentally based assessment tool of readiness for medical independence for specialty providers. Design and methods The validation process used expert panel evaluation to assess the items believed to measure the desired content in the nine age-based scales within the RAISE (Readiness Assessment of Independence for Specialty Encounters) tool. Experts in child development and transition rated items on relevance, clar...