SPN Position Statement: Transition of Pediatric Patients Into Adult Care

Abstract

SPN leadership has been active in organizing various task forces composed of members with recognized expertise and interest to work together and produce quality documents that provide guidance to the practice of pediatric nursing. The most recently published position paper follows this introduction and was produced by a team chaired by Cecily L. Betz PhD, RN, FAAN. These activities demonstrate fulfillment of SPN’s Mission, Vision and Core Values, which are: Mission The mission of the Society of Pediatric Nurses is to advance the specialty of pediatric nursing through excellence in education, research and practice. Vision To be the premier resource for nurses caring for children and their families. Core Values Commitment Accountability to members and to decision making that contributes to the profession of pediatric nursing; dedication to life-long learning, generation of new knowledge and scholarship, innovation, and advocacy for exceptional pediatric nursing care of children and families. Integrity Respectful, ethical, transparent, and fiscally responsible. Consistent expectations of collaboration and alignment of intellectual, professional, and organizational values. Leadership Visionary, leading with one voice, seeking diversity of thought, inspiring and advancing the leader qualities and strengths of the membership. Excellence Development and dissemination of evidence based standards and research based knowledge that transcends into exceptional quality outcomes for the nursing care of children and families and the promotion of the specialty of pediatric nursing. The Society of Pediatric Nurses (SPN) is committed to addressing the long-term biopsychosocial needs of adolescents and emerging adults. This includes adolescents with disabilities and/or special health care needs (ASHCN) as they prepare to leave the pediatric and child-centered systems of care and enter the- adult-focused systems of care. During this transition from pediatric to adult care, pediatric nurses can help these emerging adults as they proceed with their own development to the extent possible in achieving the competencies associated with adulthood. Adolescent health issues have become more pressing as nearly 90% of ASHCN survive into adulthood (Ferris et al., 2006Ferris M.E. Gipson D.S. Kimmel P.L. Eggers P.W. Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America.Pediatric Nephrology. 2006; 21: 1020-1026Crossref PubMed Scopus (96) Google Scholar, Quinn et al., 2010Quinn C.T. Rogers Z.R. McCavit T.L. Buchanan G.R. Improved survival of children and adolescents with sickle cell disease.Blood. 2010; 115: 3447-3452Crossref PubMed Scopus (599) Google Scholar, Reiss and Gibson, 2002Reiss J. Gibson R. Health care transition: destinations unknown.Pediatrics. 2002; 110: 1307-1314Crossref PubMed Google Scholar, Scal and Ireland, 2005Scal P. Ireland M. Addressing transition to adult health care for adolescents with special health care needs.Pediatrics. 2005; 115: 1607-1612https://doi.org/10.1542/peds.2004- 0458Crossref PubMed Scopus (0) Google Scholar). Research demonstrates improved transition models of care are needed to better prepare adolescents and emerging adults for the transfer to adult services (Betz et al., n.dBetz, C.L., O’Kane, L., Lobo, M., & Nehring, A Systematic Review: Health Care Transition Service Models. Nursing Outlook Doi:http://dx.doi.org/10.1016/j.outlook.2015.12.011Google Scholar, Chu et al., 2015Chu P.Y. Maslow G.R. von Isenburg M. Chung R.J. Systematic Review of the Impact of Transition Interventions for Adolescents With Chronic Illness on Transfer From Pediatric to Adult Healthcare.Journal of Pediatric Nursing. 2015; 5: e19-e27https://doi.org/10.1016/j.pedn.2015.05.022. EpubCrossref Google Scholar, Prior et al., 2014Prior M. McManus M. White P. Davidson L. Measuring the “Triple Aim” in transition care: A systematic review.. 2014; 134: e1648-e1661Google Scholar). This position statement is designed as framework for pediatric nurses to provide comprehensive health care transition services based upon a family-centered, adolescent-focused and interdisciplinary framework of care. For many ASHCN, the transition from pediatric to adult health care is not well planned and often results in disruptions in care, preventable complications, and avoidable costs. Despite the need for continuous, coordinated care from a pediatric to an adult medical home, research findings demonstrate that ASHCN report that they did not receive needed transition support. (Betz et al., 2013Betz C.L. Nehring W. Lobo M. Bui K. Voices Not Heard: A Systematic Review of Adolescents’ and Emerging Adults’ Perspectives of Health Care Transition.Nursing Outlook. 2013; 61: 311-336Abstract Full Text Full Text PDF PubMed Scopus (91) Google Scholar, Joly, 2015Joly E. Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review.Journal of Pediatric Nursing. 2015; 30: e91-103https://doi.org/10.1016/j.pedn.2015.05.016Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar, National Med-Peds Residents' Association, 2013National Med-Peds Residents' Association Transition for Youth and Young Adults from Pediatric to Adult Health Care: A Practice Quality Improvement Approach.https://medpeds.org/transition-for-youth-and-young-adults-from-pediatric-to-adult-health-care-a-practice-quality-improvement-approach/Date: 2013Google Scholar). It is suggested that schools of nursing, healthcare institutions and community based health care programs wherein pediatric nursing care is taught and/or provided utilize this document as a resource to ensure that appropriate education, training, resources and effective staffing plans are provided to ensure the provision of quality, customer focused care for pediatric patients and their families. Transfer of care refers to the dual process of locating and arranging primary, specialty and interdisciplinary health care providers who provide care to adolescents as their eligibility for services provided by pediatric providers ends. Health Care Transition (HCT) refers to the comprehensive services based upon an interdisciplinary framework of care that addresses the biopsychosocial needs of early adolescents (11-15 years of age), late adolescents (16-18 years of age), and emerging adults (18-25 years of age). This framework of services is utilized throughout the lifespan and intensifies in early adolescence to ensure adolescents and emerging adults learn the self-management knowledge and skills necessary to manage their daily treatment needs as independently as possible and become a literate health consumer. Comprehensive services include coordination of care that involves referrals to the service systems of education and training, employment, community living, rehabilitation and advocacy. Since 2002, a number of studies have examined both practice-based approaches and barriers to transition from the perspectives of pediatric and adult health care providers. This research has identified a range of barriers in facilitating the successful transfer of care and health care transition. Barriers include inadequate and delayed planning for transfer and transition; lack of formalized guidelines to direct provision of health care transition services including a written transition plan and portable medical summary; and insufficient health care transition resource materials. Other barriers identified include shortages of available adult providers, lack of providers’ HCT knowledge about the planning process and transition and adult community-based resources; and lack of an identified person responsible for transition planning (Fegran et al., 2014Fegran L. Hall E.O.C. Uhrenfeldt L. Aagaard H. Ludvigsen M.S. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis.International Journal of Nursing Studies. 2014; 51: 123-135https://doi.org/10.1016/j.ijnurstu.2013.02.001Abstract Full Text Full Text PDF PubMed Scopus (156) Google Scholar, Joly, 2015Joly E. Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review.Journal of Pediatric Nursing. 2015; 30: e91-103https://doi.org/10.1016/j.pedn.2015.05.016Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar, National Med-Peds Residents' Association, 2013National Med-Peds Residents' Association Transition for Youth and Young Adults from Pediatric to Adult Health Care: A Practice Quality Improvement Approach.https://medpeds.org/transition-for-youth-and-young-adults-from-pediatric-to-adult-health-care-a-practice-quality-improvement-approach/Date: 2013Google Scholar, Nehring et al., 2015Nehring W.N. Betz C.L. Lobo M.L. Uncharted Territory: Systematic Review of Providers’ Roles, Understanding and Views Pertaining to Health Care Transition.Journal of Pediatric Nursing. 2015; 30: 732-747https://doi.org/10.1016/j.pedn.2015.05.030Abstract Full Text Full Text PDF PubMed Scopus (37) Google Scholar, Reiss et al., 2005bReiss J.G. Gibson R.W. Walker L.R. Health care transition: youth, family, and povider perspectives.Pediatrics. 2005; 115: 112-120Crossref PubMed Scopus (307) Google Scholar, Schultz, 2013Schultz R.J. Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care.Journal of Pediatric Health Care. 2013; 27: 359-366https://doi.org/10.1016/j.pedhc.2012.03.004Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar, Speller-Brown et al., 2015Speller-Brown B. Patterson K.K. VanGraafeiland B. Feetham S. Sill A. Darbari D. Meier E.R. Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease.Journal of Pediatric Nursing. 2015; 30: 788-796https://doi.org/10.1016/j.pedn.2015.06.008Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar, Young et al., 2009Young 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 and Occupational Therapy in Pediatrics. 2009; 29: 345-361https://doi.org/10.3109/01942630903245994Crossref PubMed Scopus (70) Google Scholar). The transition to adult health care services for the adolescent or young adult both with and without special health care needs is a process that occurs over time with increasing emphasis during early adolescence. Many young adults who have transferred their care into the adult health care system have experienced barriers to care. These barriers include expectations of adult care, decreased provider familiarity with complex chronic conditions of childhood or adolescent and young adult development, and a lack of support around the access to specialty and community services (Cook et al., 2013Cook K. Siden H. Jack S. Thabane L. Browne G. Up against the system: A case study of young adult perspectives transitioning from pediatric palliative care.Nursing Research and Practice. 2013; 2013: 1-10https://doi.org/10.1155/2013/286751Crossref Google Scholar, Fegran et al., 2014Fegran L. Hall E.O.C. Uhrenfeldt L. Aagaard H. Ludvigsen M.S. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis.International Journal of Nursing Studies. 2014; 51: 123-135https://doi.org/10.1016/j.ijnurstu.2013.02.001Abstract Full Text Full Text PDF PubMed Scopus (156) Google Scholar, Reiss et al., 2005bReiss J.G. Gibson R.W. Walker L.R. Health care transition: youth, family, and povider perspectives.Pediatrics. 2005; 115: 112-120Crossref PubMed Scopus (307) Google Scholar, Schultz, 2013Schultz R.J. Parental experiences transitioning their adolescent with epilepsy and cognitive impairments to adult health care.Journal of Pediatric Health Care. 2013; 27: 359-366https://doi.org/10.1016/j.pedhc.2012.03.004Abstract Full Text Full Text PDF PubMed Scopus (33) Google Scholar, Young et al., 2009Young 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 and Occupational Therapy in Pediatrics. 2009; 29: 345-361https://doi.org/10.3109/01942630903245994Crossref PubMed Scopus (70) Google Scholar). Although many of these barriers can be attributed to differences between pediatric and adult health care, pediatric nurses can play an important role in addressing these barriers as they care for adolescents and emerging adults prior to, during and following the transition to adult care. Health care transition is a service model that involves three distinct yet integrated components of care: a) the period of Extended HCT Preparation; b) the Transfer of Care Period; and c) the period of Post Health Care Transition/Transfer of Care. Each period is an essential component of this service model and is integral to promoting successful health care transition outcomes for adolescents and emerging adults as they transition to adult care and adulthood. Extended HCT Preparation, beginning in early adolescence, refers to the long-term health care transition planning needed to assist and support the adolescent/young adult to become competent as is developmentally appropriate with self-management knowledge and skills and the acquisition of life skills. The Transfer of Care Period, occurring between ages 18 to 21 years, refers to the intensive effort directed to the transfer of care to adult care providers and resources. Post Health Care Transition/Transfer of Care addresses the recommendations to facilitate achievement of HCT outcomes, which include implementation of quality improvement and research efforts that are needed for evidence based practice and to contribute to the science of health care transition. As described below, these components of care, although focused in their objectives of care represent an integration of purpose and effort to effect optimal outcomes for adolescents and young adults and their families during health care transition. The Society of Pediatric Nursing recognizes that in order to provide optimal transitional care from pediatric to adult care, there must be adequate preparation in the framework of services initiated prior to transition. This preparation involves nurses and interdisciplinary colleagues with the expertise in the comprehensive biopsychosocial needs of all adolescents as they move from pediatric focused care to emerging adult and adult provider systems. Concepts of autonomy, independence, self-determination, and self-advocacy are integrated into the principles of care.1.HCT planning should be initiated well before the intensive period (beginning at 12 years of age) of planning, preferably in early adolescence.2.HCT planning includes the adolescent/young adult, the family, the current healthcare team (Bridgett et al., 2015Bridgett M. Abrahamson G. Ho J. Transition, It's More Than Just An Event: Supporting Young People With Type 1 Diabetes.Journal of Pediatric Nursing. 2015; 30: e11-e14https://doi.org/10.1016/j.pedn.2015.05.008Abstract Full Text Full Text PDF PubMed Scopus (7) Google Scholar, Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Joly, 2015Joly E. Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review.Journal of Pediatric Nursing. 2015; 30: e91-103https://doi.org/10.1016/j.pedn.2015.05.016Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar).3.HCT plans should be based upon a framework of care that incorporates health care transition best practices for the adolescent/family and emerging adult. This care should focus on the adolescent’s interests, needs and preferences. The plan of care should also have measureable outcomes, benchmarks of achievement, and an interdisciplinary approach to care incorporating the nursing process; Benchmarks should be created based upon a detailed timeline, which may be unique for each individual adolescent and family (American Academy of Pediatrics et al., 2011American Academy of Pediatrics American Academy of Family Physicians American College of Physicians Transitions Clinical Report Authoring Group Cooley W.C. Sagerman P.J. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200https://doi.org/10.1542/peds.2011-0969Crossref PubMed Scopus (785) Google Scholar, Betz et al., 2014Betz C.L. Ferris M.E. Woodward J.F. Okumura M.J. Jan S. Wood D.L. authoring group for the Health Care Transition Research Consortium The Health Care Transition Research Consortium Health Care Transition Model: A Framework for Research and Practice.Journal of Pediatric Rehabilitation Medicine. 2014; 7: 3-15https://doi.org/10.3233/PRM-140277Crossref PubMed Scopus (66) Google Scholar, Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Joly, 2016Joly E. Integrating Transition Theory and Bioecological Theory: A theoretical perspective for nurses supporting the transition to adulthood for young people with medical complexity.Journal of Advanced Nursing. 2016; 72: 1251-1262https://doi.org/10.1111/jan.12939Crossref PubMed Scopus (13) Google Scholar).4.A formalized process of assessment based upon a HCT framework should be used as the basis for plan development. There are several assessment tools available that can be used to measurewhat has been referred to as transition readiness. The plan is expected to be fluid and responsive to the needs of the adolescent and emerging adult based upon continuous assessment of needs and readiness (American Academy of Pediatrics et al., 2011American Academy of Pediatrics American Academy of Family Physicians American College of Physicians Transitions Clinical Report Authoring Group Cooley W.C. Sagerman P.J. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200https://doi.org/10.1542/peds.2011-0969Crossref PubMed Scopus (785) Google Scholar, Celona, 2015Celona C.A. Measuring Acuity and Patient Progress for Youth With Special Health Care Needs in Transition Care Utilizing Nursing Outcomes.Journal of Pediatric Nursing. 2015; 30: e15-e18https://doi.org/10.1016/j.pedn.2015.05.005Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar, Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Ferris et al., 2015Ferris M. Cohen S. Haberman C. Javalkar K. Massengill S. Mahan J.D. Hooper S.R. Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire.Journal of Pediatric Nursing. 2015; 30: 691-699https://doi.org/10.1016/j.pedn.2015.05.009Abstract Full Text Full Text PDF PubMed Scopus (78) Google Scholar, Fredericks et al., 2010Fredericks E.M. Dore-Stites D. Well A. Magee J.C. Freed G.L. Shieck V. Lopez M.J. Assessment of transition readiness skills and adherence in pediatricliver transplant recipients.Pediatric Transplantation. 2010; 14: 944-953https://doi.org/10.1111/j.1399-3046.2010.01349.xCrossref PubMed Scopus (136) Google Scholar, Moynihan et al., 2015Moynihan M. Saewyc E. Whitehouse S. Paone M. McPherson G. Assessing readiness for transition from paediatric to adult health care: Revision and psychometric evaluation of the ‘Am I ON TRAC for Adult Care’ questionnaire.Journal of Advanced Nursing. 2015; 71: 1324-1335https://doi.org/10.1111/jan.12617Crossref PubMed Scopus (46) Google Scholar, Speller-Brown et al., 2015Speller-Brown B. Patterson K.K. VanGraafeiland B. Feetham S. Sill A. Darbari D. Meier E.R. Measuring Transition Readiness: A Correlational Study of Perceptions of Parent and Adolescents and Young Adults with Sickle Cell Disease.Journal of Pediatric Nursing. 2015; 30: 788-796https://doi.org/10.1016/j.pedn.2015.06.008Abstract Full Text Full Text PDF PubMed Scopus (20) Google Scholar, Uzark et al., 2015Uzark K. Smith C. Donohue J. Yu S. Afton K. Norris M. Cotts T. Assessment of Transition Readiness in Adolescents and Young Adults with Heart Disease.Journal of Pediatrics. 2015; 67: 1233-1238https://doi.org/10.1016/j.jpeds.2015.07.043Abstract Full Text Full Text PDF Scopus (40) Google Scholar, Wood et al., 2014Wood D.L. Sawicki G.S. Miller M.D. Smotherman C. Lukens-Bull K. Livingood W.C. Kraemer D.F. The Transition Readiness Assessment Questionnaire (TRAQ): Its Factor Structure, Reliability, and Validity.Academic Pediatrics. 2014; 14: 415-422https://doi.org/10.1016/j.acap.2014.03.008Abstract Full Text Full Text PDF PubMed Scopus (214) Google Scholar).5.A health care transition coordinator (HCTC) should be identified to provide leadership in the coordination of the transition. This HCTC will organize and guide the transition based on a predetermined policy unique to the patient population served, but structurally consistent with other specialty practices in the same organization (NCYP, 2013). The care coordinator must consider the clinical, psychosocial and educational needs of the adolescent (Hopper et al., 2014; National Institute for Health and Care Excellence, 2016National Institute for Health and Care Excellence. (2016). Transition from children’s to adults' services for young people using health or social care services: NICE guidance. Retrieved from https://www.nice.org.uk/guidance/ng43Google Scholar; NCYP, 2013; Royal College of Nursing, 2013Royal College of Nursing Adolescent transition care: Guidance for nursing staff.https://www.rcn.org.uk/professional-development/publications/pub-004510Date: 2013Google Scholar).6.In the event there is not a designated HCTC available, the pediatric nursing staff will be well positioned to coordinate the care between pediatrics and adult health care. Ideally, one nurse can assume the role of the HCTC coordinating the preparation of patients to move into the adult care world. The coordinating care must include clinical, psychosocial, and educational needs and coordinate all for a successful transition (Betz and Redcay, 2005Betz C.L. Redcay G. Dimensions of the Transition Service Coordinator Role.Journal of Specialized Pediatric Nursing. 2005; 10: 49-59Crossref PubMed Scopus (58) Google Scholar: Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar; Hopper et al., 2014; Maturo et al., 2015Maturo D. Powell A. Major-Wilson H. Sanchez K. De Santis J.P. Friedman L.B. Transitioning Adolescents and Young Adults With HIV Infection to Adult Care: Pilot Testing the "Movin' Out" Transitioning Protocol.Journal of Pediatric Nursing. 2015; 30: e29-e35https://doi.org/10.1016/j.pedn.2015.06.013Abstract Full Text Full Text PDF PubMed Scopus (31) Google Scholar).7.Emerging adults need to acquire the self-management knowledge and skills to ensure independence with daily treatment regimen as appropriate for their developmental level. The pediatric nurse plays a key role educating patients about their disease, and the self care skills required to maintain health and wellbeing including emergency preparedness as they transition to adult care (Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar).8.In addition to teaching personal care skills, the pediatric nurse should provide education for life skills necessary to successfully function in the adult health care setting, namely skills in communication, decision making, assertiveness, self- determination and advocacy (Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Hait et al., 2006Hait E. Arnold J.H. Fishman L.N. Educate, communicate, anticipate- practical recommendations for transitioning adolescents with IBD to adult health care.Inflammatory Bowel Diseases. 2006; 12: 70-73Crossref PubMed Scopus (84) Google Scholar, Joly, 2015Joly E. Transition to Adulthood for Young People with Medical Complexity: An Integrative Literature Review.Journal of Pediatric Nursing. 2015; 30: e91-103https://doi.org/10.1016/j.pedn.2015.05.016Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar, Mannino, 2015Mannino J.E. Resilience and Transitioning to Adulthood among Emerging Adults with Disabilities.Journal of Pediatric Nursing. 2015; 30: e131-e145https://doi.org/10.1016/j.pedn.2015.05.017Abstract Full Text Full Text PDF PubMed Scopus (9) Google Scholar).9.The HCTC and/or the pediatric nursing staff should coordinate referrals for services to promote a successful transition, including but not limited to and as needed (Betz et al., 2014Betz C.L. Ferris M.E. Woodward J.F. Okumura M.J. Jan S. Wood D.L. authoring group for the Health Care Transition Research Consortium The Health Care Transition Research Consortium Health Care Transition Model: A Framework for Research and Practice.Journal of Pediatric Rehabilitation Medicine. 2014; 7: 3-15https://doi.org/10.3233/PRM-140277Crossref PubMed Scopus (66) Google Scholar, Betz and Redcay, 2005Betz C.L. Redcay G. Dimensions of the Transition Service Coordinator Role.Journal of Specialized Pediatric Nursing. 2005; 10: 49-59Crossref PubMed Scopus (58) Google Scholar, Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar).a.School based career planning and job training and placement programsb.Post-secondary planning supports (i.e. Disabled Student Services, Department of Rehabilitation)c.Housingd.Transportatione.Community Living Programs (i.e. recreational, social)f.Health care coverage10.The age of majority (meaning the age at which the adolescent has the legal authority to make decisions for care) needs to be considered for appropriate planning purposes. For the adolescent who has an intellectual disability and his/her family, there needs to be discussion about guardianship well before the age of majority occurs. This discussion should include information about the need and rationale for guardianship, the types of guardianships available and resources available in the community to assist families in obtaining a guardianship (e.g. referrals to no or low cost guardianships).11.During the period of health care transition, pediatric nurses should discuss with adolescents and their parents the changing dynamics of their relationship from the parent’s role as primary caregiver and case manager to that of coach, consultant and/or organizational assistant and its implications. The implementation of this transfer of care should occur during the later adolescent period (between ages 18 and 21 years), and should begin when the emerging adult exhibits signs of readiness. The process of execution will begin prior to the transition to adult care, and the intensity of the execution process will increase as plans progress. Teaching provided to the older adolescent and emerging adult getting ready for transition will intensify during the execution process, to ensure that he/she is indeed ready to transition.1.The professional Pediatric Registered Nurse is in a unique position to act as a liaison between the pediatric and adult practices. Pediatric nurses can provide resources, consultation and/or training, as requested for interdisciplinary providers and services in adult and primary care who may have limited training in the management of childhood- onset special health care needs (Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar; Hopper et al., 2014; Joly, 2016Joly E. Integrating Transition Theory and Bioecological Theory: A theoretical perspective for nurses supporting the transition to adulthood for young people with medical complexity.Journal of Advanced Nursing. 2016; 72: 1251-1262https://doi.org/10.1111/jan.12939Crossref PubMed Scopus (13) Google Scholar).2.For adolescents with intellectual disabilities, the family should have by this point taken the steps to obtain power of attorney (POA), guardianship or needed services for the adolescent. The goal should be that the adolescent will be as independent as safely possible. He/she may require supports in some areas but be independent in others. This will need to be an individualized plan for each older adolescent based on specific limitations and capabilities.3.All records are appropriately transferred to the adult primary and specialty care providers and agencies prior to the actual transfer of care. It is recommended that, if possible, a direct handoff between pediatric and adult providers should occur (Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar).4.The pediatric nurse needs to ensure that all the necessary referrals are made. Additionally, arrangements should be made for the ordering and provision of necessary equipment and supplies to prevent gaps in services. The recommendations in the previous sections addressing care prior to HCT and during the transfer of care are important so that successful outcomes can be achieved. These potentially can reduce untoward outcomes such as service discontinuities, emergency department visits and readmissions to children’s hospitals as well as lack of access to transition an adult services and supports (McDonnell et al., 2010McDonnell W.M. Kocolas I. Roosevelt G.E. Yetman A.T. Pediatric emergency department use by adults with chronic pediatric disorders.Archives of Pediatrics and Adolescent Medicine. 2010; 164: 572-576https://doi.org/10.1001/archpediatrics.2010.60Crossref PubMed Scopus (19) Google Scholar). Although pediatric nurses do not generally provide direct care for young adults following the transfer of care, there are several important considerations to be addressed following the transfer to adult care to ensure successful outcomes.1.Pediatric nurses should ensure that documentation has occurred in the pediatric records indicating that the transfer has taken place and young adults have connected with adult providers (Disabato et al., 2015Disabato J.A. Cook P.F. Hutton L. Dinkel T. Levisohn P.M. Transition from Pediatric to Adult Specialty Care for Adolescents and Young Adults with Refractory Epilepsy: A Quality Improvement Approach.Journal of Pediatric Nursing. 2015; 30: e37-e45https://doi.org/10.1016/j.pedn.2015.06.014Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar, Got Transition and Center for Healthcare Transition Improvement, 2014Got Transition Center for Healthcare Transition Improvement Six core elements for healthcare transition 2.0.http://www.gottransition.org/resourceGet.cfm?id=206Date: 2014Google Scholar, McManus et al., 2015McManus 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: 73-78https://doi.org/10.1016/j.jadohealth.2014.08.006Abstract Full Text Full Text PDF PubMed Scopus (99) Google Scholar, National Institute for Health and Care Excellence, 2016National Institute for Health and Care Excellence. (2016). Transition from children’s to adults' services for young people using health or social care services: NICE guidance. Retrieved from https://www.nice.org.uk/guidance/ng43Google Scholar).2.The young adult and family should be encouraged to continue to engage in ongoing involvement and communication with community, public health and school programs that may provide additional guidance and support around other areas of transition to adult services after the transition to adult health services has occurred (Findley et al., 2015Findley M.K. Cha E. Wong E. Faulkner M.S. A Systematic Review of Transitional Care for Emerging Adults with Diabetes.Journal of Pediatric Nursing. 2015; 30: e47-e62https://doi.org/10.1016/j.pedn.2015.05.019Abstract Full Text Full Text PDF PubMed Scopus (23) Google Scholar).3.Pediatric nurses should be involved in the development of quality improvement, evaluation and research projects exploring achievement of outcomes such as independence, self-management, adherence, quality of life, involvement in education, vocation and/or recreation, and social network formation as adults. Outcomes explored should be relevant to the patient population services. Such work can provide an indication of the success of and areas of improvement for health care transition planning and implementation (Aldiss et al., 2015Aldiss S. Ellis J. Cass H. Pettigrew T. Rose L. Gibson F. Transition from child to adult care – ‘It’s not a one-off event’: Development of benchmarks to improve the experience.Journal of Pediatric Nursing. 2015; 30: 638-647https://doi.org/10.1016/j.pedn.2015.05.020Abstract Full Text Full Text PDF PubMed Scopus (30) Google Scholar, American Academy of Pediatrics et al., 2011American Academy of Pediatrics American Academy of Family Physicians American College of Physicians Transitions Clinical Report Authoring Group Cooley W.C. Sagerman P.J. Supporting the health care transition from adolescence to adulthood in the medical home.Pediatrics. 2011; 128: 182-200https://doi.org/10.1542/peds.2011-0969Crossref PubMed Scopus (785) Google Scholar, Campbell et al., 2016Campbell F. Biggs K. Aldiss S.K. O’Neill P.M. Clowes M. McDonagh J. Gibson F. 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Transitioning Adolescents and Young Adults With HIV Infection to Adult Care: Pilot Testing the "Movin' Out" Transitioning Protocol.Journal of Pediatric Nursing. 2015; 30: e29-e35https://doi.org/10.1016/j.pedn.2015.06.013Abstract Full Text Full Text PDF PubMed Scopus (31) Google Scholar). REVIEWED AND APPROVED BY: Subject Matter Expert/Task Force: SPN Transition to Care Task Force Date: 09/15/2016 Chair: Cecily L. Betz, PhD, RN, FAAN Task Force Members: Joanne Barton, MSN, RN, CPN Mary (Molly) Benkert, MS, RN-BC, CBIS Elizabeth Doyle, DNP, APRN, CDE Sandra Fleishman, MSN, RN, CPN, CPAN Ginger Holloway, MSN, RN, CPN, CNE Elizabeth Joly Straus, MN, RN Barbara Martens, BSN, RN, PHN, CPN Lori Williams, DNP, RN, RNC-NIC, CCRN, NNP-BC Linda Wray, MSN, RN, CPN SPN Board of Directors: Date: 10/14/2016