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Improved health care transition for young adults with developmental disabilities referred from designated transition clinics

      Highlights

      • Factors associated with transition preparedness for YADD are not well defined.
      • YADD who met with an adult transition clinician prior to transfer experienced higher transition preparation satisfaction.
      • A structured HCT clinic model to prepare adolescents with DD for transition to adult care may improve HCT preparation satisfaction for this population.

      Abstract

      Purpose

      Young adults with intellectual/developmental disabilities (YAIDD) are a vulnerable population during HCT due to their complex care coordination and adaptive needs, yet factors associated with transition preparedness are not well defined. We aimed to determine factors associated with health care transition (HCT) preparation satisfaction for YAIDD establishing care with an adult medical home.

      Design and methods

      408 YAIDD or their families completed the HCT Feedback Survey 2.0 upon establishing adult care. Logistic regression models were used to determine associations between a composite of six HCT Feedback Survey questions that most correlated with the 2019 National Survey of Children's Health transition questions.

      Results

      YADD who had HCT preparation visits with a designated HCT clinic were 9 times more likely to have met all six composite HCT criteria after controlling for the number of technologies required and race/ethnicity (adj OR 9.04, 95% CI: 4.35, 18.76) compared to those referred from the community. Compared to patients who were referred from the community, the odds of feeling very prepared versus somewhat or not prepared were 3.7 times higher (adj OR 3.73, 95% CI: 1.90, 7.32) among patients referred from a designated HCT program.

      Conclusions

      YAIDD who participated in a structured HCT program prior to transfer to adult care experienced higher transition preparation satisfaction.

      Practical implications

      A structured HCT clinic model to prepare adolescents with DD for transition to adult care may improve HCT preparation satisfaction for this population.

      Keywords

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      References

        • American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians
        Consensus statement on health care transitions for Young adults.
        Pediatrics. 2002; 110: 1304-1306
        • Beal S.J.
        • Riddle I.K.
        • Kichler J.C.
        • Duncan A.
        • Houchen A.
        • Casnellie L.
        • Corathers S.D.
        The associations of chronic condition type and individual characteristics with Transition readiness.
        Academic Pediatrics. 2016; 16: 660-667
        • Berens J.
        • Wozow C.
        • Peacock C.
        Transition to adult care.
        Physical Medicine and Rehabilitation Clinics of North America. 2020; 31: 159-170
        • Berens J.C.
        • Peacock C.
        Implementation of an academic adult primary care clinic for adolescents and young adults with complex, chronic childhood conditions.
        Journal of Pediatric Rehabilitation Medicine. 2015; 8: 3-12
        • Betz C.L.
        • Ferris M.E.
        • Woodword J.F.
        • Okumura M.J.
        • Jan S.
        • Wood D.L.
        The health care transition research consortium health care transition model: A framework for research and practice.
        Journal of Pediatric Rehabilitation Medicine. 2014; 7: 3-15
        • Binks J.A.
        • Barden W.S.
        • Burke T.A.
        • Young N.L.
        What do we really know about the transition to adult-centered health care? A focus on cerebral palsy and spina bifida.
        Archives of Physical Medicine and Rehabilitation. 2007; 88: 1064-1073
        • Bolger A.
        • Vargus-Adams J.
        • McMahon M.
        Transition of care in adolescents with cerebral palsy: A survey of current practices.
        PM & R : The Journal of Injury, Function, and Rehabilitation. 2017; 9: 258-264
        • Cheak-Zamora N.C.
        • Thullen M.
        Disparities in quality and access to care for children with developmental disabilities and multiple health conditions.
        Maternal and Child Health Journal. 2017; 21: 36-44
        • Cheak-Zamora N.C.
        • Yang X.
        • Farmer J.E.
        • Clark M.
        Disparities in transition planning for youth with autism spectrum disorder.
        Pediatrics. 2013; 131: 447-454
        • Child and Adolescent Health Measurement Initiative
        2018–2019 National Survey of Children's Health (NSCH) data query.
        (Retrieved from Data Resource Center for Child and Adolescent Health supported by the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). website:)
        • Ciccarelli M.R.
        • Gladstone E.B.
        • Armstrong Richardson E.A.J.
        Implementation of a transdisciplinary team for the Transition support of medically and socially complex youth.
        Journal of Pediatric Nursing. 2015; 30: 661-667
        • Cox D.R.
        Regression models and life tables (with discussion).
        Journal of the Royal Statistical Society B. 1972; 34: 187-220
        • Cvejic R.C.
        • Trollor J.N.
        Transition to adult mental health services for young people with an intellectual disability.
        Journal of Paediatrics and Child Health. 2018; 54: 1127-1130
        • Fremion E.
        • Morrison-Jacobus M.
        • Castillo J.
        • Castillo H.
        • Ostermaier K.
        A chronic care model for spina bifida transition.
        Journal of Pediatric Rehabilitation Medicine. 2017; 10: 243-247
        • Gabriel P.
        • McManus M.
        • Rogers K.
        • White P.
        Outcome evidence for structured pediatric to adult health care transition interventions: A systematic review.
        Journal of Pediatrics. 2017; 188: 263-269.e15
        • Gauthier-Boudreault C.
        • Gallagher F.
        • Couture M.
        Specific needs of families of young adults with profound intellectual disability during and after transition to adulthood: What are we missing?.
        Research in Developmental Disabilities. 2017; 66: 16-26
        • Got Transition
        (Retrieved April 2, 2019, from The National Alliance to Advance Adolescent Health website:)
        • GotTransition.org
        Sample transition readiness assessment for youth / young adults.
        2014: 25729 (Retrieved from) (accessed 2016)
        • Gray W.N.
        • Schaefer M.R.
        • Resmini-Rawlinson A.
        • Wagoner S.T.
        Barriers to transition from pediatric to adult care: A systematic review.
        Journal of Pediatric Psychology. 2018; 43: 488-502
        • Haarbauer-Krupa J.
        • Alexander N.M.
        • Mee L.
        • Johnson A.
        • Wise J.
        • Gupta N.A.
        • Marchak J.G.
        Readiness for transition and health-care satisfaction in adolescents with complex medical conditions.
        Child: Care, Health and Development. 2019; 45: 463-471
        • Harris P.A.
        • Taylor R.
        • Minor B.L.
        • Elliott V.
        • Fernandez M.
        • O’Neal L.
        • Duda S.N.
        The REDCap consortium: Building an international community of software platform partners.
        Journal of Biomedical Informatics. 2019; 95103208
        • Harris P.A.
        • Taylor R.
        • Thielke R.
        • Payne J.
        • Gonzalez N.
        • Conde J.G.
        Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support.
        Journal of Biomedical Informatics. 2009; 42: 377-381
        • Heron L.M.
        • Agarwal R.
        • Greenup J.
        • Maddux M.
        • Attong N.
        • Burke S.L.
        Disparities in healthcare transition support received by adolescents with special healthcare needs.
        Journal of Applied Research in Intellectual Disabilities. 2020; 33: 180-192
        • Holm S.
        A simple sequentially rejective multiple test procedure.
        Scandinavian Journal of Statistics. 1979; 6: 65-70
        • Jacobson D.N.O.
        • Lowing K.
        • Hjalmarson E.
        • Tedroff K.
        Exploring social participation in young adults with cerebral palsy.
        Journal of Rehabilitation Medicine. 2018; 51: 167-174
        • Krell K.
        • Haugen K.
        • Torres A.
        • Santoro S.L.
        Description of daily living skills and independence: A cohort from a multidisciplinary down syndrome clinic.
        Brain Sciences. 2021; 11: 1012
        • Lariviere-Bastien D.
        • Bell E.
        • Majnemer A.
        • Shevell M.
        • Racine E.
        Perspectives of young adults with cerebral palsy on transitioning from pediatric to adult healthcare systems.
        Seminars in Pediatric Neurology. 2013; 20: 154-159
        • Lebrun-Harris L.A.
        • McManus M.A.
        • Ilango S.M.
        • Cyr M.
        • McLellan S.B.
        • Mann M.Y.
        • White P.H.
        Transition planning among US youth with and without special health care needs.
        Pediatrics. 2018; 142e20180194
        • Lennon N.
        • Church C.
        • Miller F.
        Patient-reported mobility function and engagement in young adults with cerebral palsy: A cross-sectional sample.
        Journal of Children’s Orthopaedics. 2018; 12: 197-203
        • Lin S.C.
        • Lee M.-L.T.
        • Adirim T.A.
        Transition outcomes for young adults with disabilities.
        Journal of Pediatric Rehabilitation Medicine. 2015; 8: 23-30
        • Lotstein D.S.
        • Ghandour R.
        • Cash A.
        • McGuire E.
        • Strickland B.
        • Newacheck P.
        Planning for health care transitions: Results from the 2005-2006 national survey of children with special health care needs.
        Pediatrics. 2009; 123: e145-e152
        • Lotstein D.S.
        • Ghandour R.
        • Cash A.
        • McGuire E.
        • Strickland B.
        • Newacheck P.
        Planning for health care transitions: Results from the 2005-2006 national survey of children with special health care needs.
        Pediatrics. 2009; 123
        • Lotstein D.S.
        • Inkelas M.
        • Hays R.D.
        • Halfon N.
        • Brook R.
        Access to Care for Youth with special health care needs in the Transition to adulthood.
        Journal of Adolescent Health. 2008; 43: 23-29
        • Lotstein D.S.
        • McPherson M.
        • Strickland B.
        • Newacheck P.W.
        Transition planning for youth with special health care needs: Results from the national survey of children with special health care needs.
        Pediatrics. 2005; 115: 1562-1568
        • Maeng D.D.
        • Snyder S.R.
        • Davis T.W.
        • Tomcavage J.F.
        Impact of a complex care management model on cost and utilization among adolescents and Young adults with special care and health needs.
        Population Health Management. 2017; 20: 435-441
        • McManus M.
        • White P.
        • Barbour A.
        • Downing B.
        • Hawkins K.
        • Quion N.
        • McAllister J.W.
        Pediatric to adult Transition: A quality improvement model for primary care.
        Journal of Adolescent Health. 2015; 56: 73-78
        • McPherson M.
        • Arango P.
        • Fox H.
        • Lauver C.
        • McManus M.A.
        • Newacheck P.W.
        • Strickland B.B.
        A new definition of children with special health care needs.
        Pediatrics. 2018; 102: 137
        • Okumura M.J.
        • Hersh A.O.
        • Hilton J.F.
        • Lotstein D.S.
        Change in health status and access to care in young adults with special health care needs: Results from the 2007 National Survey of Adult Transition and Health.
        Journal of Adolescent Health. 2012; 52: 413-418
        • Rosen D.S.
        • Blum R.W.
        • Britto M.
        • Sawyer S.M.
        • Siegel D.M.
        Transition to adult health care for adolescents and young adults with chronic conditions.
        Journal of Adolescent Health. 2003; 33: 309-311
        • Rudy C.
        • Walsh S.
        • Serota J.A.
        When do pediatric patients graduate?.
        Journal of Pediatric Health Care. 2006; 20: 334-335
        • Schmidt A.
        • Ilango S.M.
        • McManus M.A.
        • Rogers K.K.
        • White P.H.
        Outcomes of pediatric to adult health care transition interventions: An updated systematic review.
        Journal of Pediatric Nursing. 2020; 51: 92-107
        • Shepard C.
        • Doerge E.
        • Eickmeyer A.
        • Kraft K.
        • Wan J.
        • Stoffel J.T.
        Ambulatory care utilization among patients with spina bifida: Change in care from childhood to adulthood.
        The Journal of Urology. 2018; 199: 1050-1055
        • Stiles-Shields C.
        • Kritikos T.K.
        • Starnes M.
        • Smith Z.R.
        • Holmbeck G.N.
        Adults with spina bifida: Demographic and physician-related correlates.
        Journal of Developmental & Behavioral Pediatrics. 2021; (Sep 24)https://doi.org/10.1097/DBP.0000000000001001
        • Suris J.-C.
        • Akre C.
        Key elements for, and indicators of, a successful Transition: An international Delphi study.
        Journal of Adolescent Health. 2015; 56: 612-618
        • Szalda D.
        • Steinway C.
        • Greenberg A.
        • Quinn S.
        • Stollon N.
        • Wu K.
        • Jan S.
        Developing a hospital-wide transition program for young adults with medical complexity.
        Journal of Adolescent Health. 2019; 65: 476-482
        • White P.H.
        • Cooley W.C.
        • Transitions Clinical Report Authoring Group, American Academy of Pediatrics, American Academy of Family Physicians, & American College of Physicians
        Supporting the health care Transition from adolescence to adulthood in the medical home.
        Pediatrics. 2018; 142e20182587
        • Woodward J.F.
        • Swigonski N.L.
        • Ciccarelli M.R.
        Assessing the health, functional characteristics, and health needs of youth attending a noncategorical transition support program.
        Journal of Adolescent Health. 2012; 51: 272-278
        • Young N.L.
        • Barden W.S.
        • Mills W.A.
        • Burke T.A.
        • Law M.
        • Boydell K.
        Transition to adult-oriented health care: Perspectives of youth and adults with complex physical disabilities.
        Physical & Occupational Therapy in Pediatrics. 2009; 29 (Retrieved from): 345-361
        • Zabel A.T.
        • Jcaoson L.A.
        • Zachik C.
        • Levey E.
        • Kinsman S.
        • Mahone E.M.
        Parent- and self-ratings of executive functions in adolescents and young adults with spina bifida.
        The Clinical Neuropsychologist. 2011; 25: 926-941