- Email: [email protected]
Current Issues in Transitioning from Pediatric to Adult-Based Care for Youth with Chronic Health Care Needs
Current Issues in Transitioning from Pediatric to Adult-Based Care for Youth with Chronic Health Care Needs Albert C. Hergenroeder, MD1, Constance M. Wiemann, PhD1, and Mitchell B. Cohen, MD2
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hronic disease in 6- to 21-year-olds affects approximately 1 in 5 US families.1 Advances in medicine have improved the outcome for children with chronic illnesses; in the US, 90% of children and youth with special health care needs of a physical nature will enter adulthood, numbering one-half million annually. An estimated additional 600 000 16- to 17-year-olds in the US have serious mental illness.2 In this review, we will include chronic physical, mental, and behavioral illnesses as special health care needs and will combine children, adolescents, and young adults under the umbrella term, youth and young adults with special health care needs (YYASHCN).3,4 A 2002 Consensus Statement3 identified multiple deficiencies in health care transition, including: (1) YYASHCN are not prepared for health care transition; (2) pediatric health care providers are not prepared to assist in transition readiness for YYASHCN and their families; (3) inadequate communication between the subspecialty and medical home providers; and (4) an adult health care system not adequately prepared to receive young adults with special health care needs. Despite increased attention to the importance of health care transition from pediatric to adult-based care, progress in addressing these barriers has been slow. Increased morbidity and mortality have been reported in the post-transition period if the transition is poorly managed, and those with complex conditions and neurocognitive disabilities tend to do worse.5 The goal of this article is to briefly describe the broad issues of health care transition from pediatric to adult-based care and opportunities for improvement.
Health Care Transition Planning Is Not Occurring as a Standard of Care In 2009 the term “core transition outcome” was coined to describe key elements in successful health care transition planning for YYASHCN, to include having discussions with a health care provider about future adult health care needs, such as finding an adult provider and securing health insurance, and encouraging young adults to take more responsibility for their care.6 Forty-one percent of parents of YYASHCN reported that this core outcome was met with no reported discernable improvement between 2005 and 2010.7 Similarly, transitioning youth report they did not receive health care transition counseling8 and did not know enough about the transition in advance.9 In one study,
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39% of adolescents with congenital heart disease and 51% of their parents had adequate knowledge of their disease.10 Impoverished and ethnic minority youth are less likely to report receiving transition preparation,7 which can contribute to health disparities. Across many disease conditions, improvement is needed in methods to facilitate transition readiness in pediatric care and in the readiness of adult health care systems to provide care for YYASHCN.11 There is little evidence to inform what structures and processes facilitate successful transition to adult-based care. Having the patient meet the adult provider before the actual transition to adult care improves success.5,8 Most studies evaluating transitional care have been for patients with diabetes mellitus with existing evidence supporting the use of educational programs for transition-age patients, transition coordinators, joint pediatric and adult clinics, specific young adult clinics, after hours phone support, and enhanced follow-up after transition.8,12 Given the associations between oral and systemic health, this applies to dental care as well, especially for YYASHCN who are at risk for poor dental health compared with peers without special health care needs.13,14 Thus, there are individual patient, family, medical practice, hospital, and system level opportunities for improvement that could contribute to better health care transition.15
Preparing Youth and Families for Transition Adolescence is a period of profound cognitive, emotional, and physical maturation that can be altered by a chronic illness.4 The interface between adolescent development and a chronic illness should be addressed in health care transition planning while recognizing that young adults are developmentally different than both younger children and older adults. Many YYASHCN and their families have built a trusting relationship with their pediatrician and are ambivalent about transferring to adult-based care.8 It is also difficult for pediatricians to let go.4 This relationship exists with pediatric dentists as well, many of whom are
From the 1Baylor College of Medicine, Houston, TX; and 2University of Alabama at Birmingham Children’s of Alabama, Birmingham, AL Supported by the Office of Title V & Family Health, Texas Department of State Health Services, using Title V Maternal and Child Health Services Block Grant Funds (2014004647/0009819A), the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) (D70MC23045). The findings in this article are that of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by. HRSA, HHS, or the US Government. The authors declare no conflicts of interest. 0022-3476/$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2015.08.005
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Vol. 167, No. 6 December 2015 providing care for patients in their 40s.13 Planning should start years before the expected transfer.16 It is important to distinguish between health care transition eligibility and readiness. Many systems of care approach health care transition based on eligibility, often using age (eg, 18 years), insurance criteria, high school graduation, or becoming pregnant as criteria for transition. However, these criteria may be unrelated to health care transition readiness and their use could exacerbate existing health disparities. Health care transition readiness can be facilitated by early planning, including a written health care transition plan by age 14 years, and acquiring a set of core competencies composed of the essential knowledge and skills needed to self-manage.16-18 Operational definitions of health care transition readiness have begun to be established and imply being able to navigate the adult health care system. Having basic disease management knowledge and skills is a starting point yet is different from understanding the disease process.19 Youth with HIV have identified the need for increased continuity of care, assistance with logistics, improved communication between providers and caregivers, and individualized management of their transition process.20 Families and YYASHCN need to initiate conversations about health care transition planning at an early age, even before formal transition planning occurs.21 Families should be encouraged to accept the transfer of health care management and decision-making to transition-ready youth or their trusted health surrogate, as the parents will not be able to play this role indefinitely. Activities that facilitate planning include facilitated networking with families who have children with similar illnesses and using formal and information organizations, such as Family Voices.22 There is a need to improve family and patient-centered care.23 Although families are legally spokespersons for children until the age of majority, health care decisions often are made without involvement of the youth through an “assent to consent” process. In many cases, no discussion occurs nor is the youth given the opportunity to practice informed decision-making via the assent to consent process. As YYASHCN mature, these skills should be taught. Most families are neither trained nor encouraged to transfer knowledge and skills, first as a teacher, then as mentor to the youth. Lack of disease-specific knowledge among YYASHCN is associated with parent education level.24 The range of support required by the youth, with or without special health care needs, will depend on the young person’s health status and cognitive level. Once the youth reaches age 18 years, the decision-maker can range from the patient him/herself, the parent/caregiver as temporary or partial health care surrogate/power of attorney in specific health areas, to full-time support via different levels of guardianship. Only one-half of primary care providers routinely invite the parents out of the room to discuss confidential issues with adolescents.25 Yet this time is essential for YYASHCN to develop confidence as self-advocates. There is a shared responsibility between pediatric health care providers and families to prepare for the difference between pediatric and
adult-based care and to delineate the roles of the youth, family and providers.8 In fact, a family history collection and clinical decision support tool was noted to have positive effects on patient care, including increases in quality, personalization of care, and patient engagement in primary care.26 Increasing awareness among the YYASHCN’s family that health care transition to adult-based care is a desirable outcome is to be encouraged.4
Training Pediatric Health Care Providers and Preparing Pediatric Systems of Care to Plan for Health Care Transition Pediatric providers and pediatric systems of care need to be better prepared to facilitate health care transition4,27 and be willing to adopt health care transition as part of their practice. In part, this is related to the competencies of pediatricians that extend through age 21 years: just as adult physicians may not be trained in some pediatric diseases, pediatricians are not trained in many adult diseases. Likewise, in spite of many YYASHCN being seen by pediatric dentists, they are not equipped to provide adult-centered care such as dentures, permanent crowns, and implants.13 A patient’s desire to be more responsible for their health care, by gaining a sense of control over their health, should precede transfer of care from the pediatric provider. Specific skills include scheduling appointments, talking to their doctor alone, and “wanting to be taken more seriously” by their physicians. Encouraging the patient to form a partnership with the pediatric provider and to exercise shared decision making for medical care will require a shift for many physicians. Youth report that health care transition planning was facilitated when they were viewed as a partner in the discussion.28 Pediatric providers and their practices could improve in a core group of knowledge, skills, and practices regarding health care transition planning, and enhance the sense of partnership with the patient, including being more receptive to their needs.27,29 These include inviting the parent out of the room and encouraging patients to ask questions about and be involved in decisions about their medical care. In addition, the use of new or interactive (nonprint) media with patient information designed for youth and young adults has been associated with improving patient’s knowledge, self-care, and transition readiness, and reducing dropout rates after health care transition to adult-based care.8 Transition-age teens have voiced a desire for support groups with other teens, a preference for using text messaging for communication, and a desire for an online health management program.19 To present transition as a normative event, a written transition policy should be discussed with patients and families, opening the door for families to be asked about their expectations of transition.8 Lists of contact information for adult providers whom the pediatric provider endorses and to whom the patient could be referred could facilitate the identification of a specific provider that the youth can contact.8 If possible, the name and contact information of a 1197
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person who can help with questions during the transition period should be provided and a visit where the pediatric and adult provider are jointly present should be arranged.8 New guidelines for health care transition planning in the pediatric medical home have been published.16 The subsequent transfer of this additional knowledge will require implementation science methods and recognition of the factors associated with provider uptake of guidelines, including electronic medical record-based technologies.30 Pediatricians report lack of time as a barrier to transition planning, yet health care transition planning can be done by many health care providers with training, including nurses, social workers, case managers, and mental health, occupational, and physical therapists.16 Guidelines exist for when to start and what to include in health care transition planning,18 but their operationalization, in terms of workflow, patient, family, and provider satisfaction, needs to be established. Electronic medical record transition planning tools have been proposed for primary care settings, yet their functionality remains to be established,31 although some are currently being implemented in primary care and subspecialty settings (eg, Helping Patients Plan the Transition from Pediatric to Adult-Based Care, an Epic Clinical Program available for download on the Epic UserWeb). There is a validated measure of health care transition readiness.28 Preparing the current and next generation of pediatric providers to facilitate health care transition will require an investment in training methods for all disciplines. Required rotations in adolescent medicine for internal medicine and family medicine residents could improve their knowledge and skills in caring for all adolescents.32 Better training in pediatric onset conditions and reproductive health issues for YYASHCN for adult providers is needed.33 Introduction of curricula to teach health care transition knowledge and skills via continuing education courses and into medical school and residency, nursing, social work, and psychology training curricula is needed. This knowledge and skillset should be addressed during the required adolescent medicine rotation for pediatric and medicine-pediatric residents. A similar requirement could facilitate these skills for other adult care providers.32
Preparing Adult Health Care Systems to Increase Their Capacity for YYASHCN Adult health care providers need to be better prepared to facilitate health care transition.4,9,27 The majority of internists are not comfortable providing primary care for young adults with chronic illnesses of childhood origin; they report lack of time and reimbursement and lack of transition coordinators, as impediments to providing primary care to transitioning patients.27,31,34,35 Effective strategies to engage adult health care systems in the care of YYASHCN are needed. Even if YYASHCN are prepared to transition into adult health care, there is a lack of availability of adult providers at the community level.16,27 YYASHCN are a major source of morbidity as many of their conditions will 1198
Vol. 167, No. 6 persist or worsen during adulthood, requiring recognition and treatment by adult providers. The lack of protocols for or experience in treating YYASHCN, the lack of appropriate medical equipment, for example, for treating adults <40 kg, and the need for more active engagement in care coordination by YYASHCN are addressable barriers to quality care.35,36 Physicians perceive care as having high quality when office systems are established to improve health care transition coordination.34 Suggestions to facilitate health care transition into the adult practice include identifying the responsible party for medical decision making, explaining unambiguous consent and confidentiality policies, and communicating office policies for medication refills and after-hours care.16 According to patients, successful transition after the referral to an adult clinic would be facilitated by longer visits, more frequent visits after the initial visit, and a mentor who has been through the transition.37 Patients were reassured about the qualifications of the adult care provider to whom they were being transferred when their pediatric provider expressed trust in that provider.8
Enhancing Communication between Pediatric and Adult Systems of Care There is a need for improved communication between pediatric and adult health care providers.38 A current medical record abstract or summary available to the patient via a portal in the electronic medical record, delivered to the adult provider by the patient at the first visit, or sent directly by the pediatric practice in advance would be a marker for improved communication between pediatric and adult providers and between the patient, family, and the adult provider, and reduce inaccuracies attributed to YYASHCN describing their medical history without an adult present.39 There is a lack of communication/coordination at many levels: between the pediatric generalist and the pediatric subspecialist; the pediatric and adult generalists; the pediatric and adult subspecialists; between the patient and their family; and between the patient/family and their pediatric and adult providers. The lack of good coordination between pediatric and adult services was identified as the most important key element in transition programs by an international expert panel and has been identified by parents.40,41 Good coordination is more than a good transfer. Transfer is common but successful transition is infrequent, occurring in 22% of YYASHCN.42 Methods to improve coordination could include starting the planning early relative to the timing of the actual transfer of care. The American Academy of Pediatrics Consensus statement suggests that transition planning start by age 12 years. Starting at least one year prior to the actual transfer is suggested as a minimum by an international expert panel.41 Additional general principles of coordination include always involving the patient and family in planning and identifying a specific adult provider. Patients want the name and contact information of a provider, not just the Hergenroeder, Wiemann, and Cohen
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December 2015 clinic name. Methods should be established that facilitate pediatric and adult practices working together, so that each patient transitioned is not a new undertaking, as much as a transition of care between two teams with an existing relationship. Good coordination could start with the patient having a medical home, as YYASHCN with medical homes have a greater chance of transition planning than those without a medical home.7 The improved coordination could be manifest as direct oral and written communication between pediatric and adult providers. The majority of Australian pediatric dentists provide a written referral to their adult or special needs dentist counterpart and 32% followed up on the referral.43 Face-to-face meetings between adult and pediatric providers in the presence of the patient/family, such as when the adult provider can attend a pediatric clinic visit before the transfer, have been associated with improved transition5, or when a pediatric provider/navigator/coordinator can accompany the patient to their initial adult visit. A follow-up mechanism to indicate if the coordination was effective, such as having a follow-up pediatric visit after the initial adult visit, having written and/ or verbal communication from the adult to the pediatric provider that the patient arrived in the clinic with all the necessary information, or indicating what information is needed, could be useful. Having the pediatric specialist remain involved as a consultant may improve the likelihood of successful transition. Many patients get lost to care or forgo care if coordination is lacking, indicating that improved methods, such as social media, to track patients and remain involved with and assist them in this vulnerable period, are needed. Finally, the transfer should allow flexibility, tailored to the needs of the patient and the family,41 and be completed when patients are medically stable and have completed treatment protocols. Patient characteristics associated with satisfaction and good adherence after transfer include developmental maturity, older age, and consent to the transfer.44,45
Developing Financing for Sustaining a Continuum of Care across Adolescence to Young Adulthood for YYASHCN Insurance status is a predictor of readiness for selfmanagement.46 Providers identify lack of insurance as a barrier to health care transition.47 Having insurance and family income are positively associated with using dental care and represents an important health disparity.13 Patients often lose medical and dental insurance when they reach 19-26 years of age. Having public insurance or switching from private to public insurance also has been associated with higher rates of loss of insurance.48 Until 2010, over one-half of young adults with chronic illnesses reported gaps in insurance coverage, with an average gap of 15 months.49 Gaps in insurance coverage can lead to forgone care and adverse consequences.50,51 There are concerns about the lack of or poor reimbursement for services, but fewer than 1 in 5 parents report having discussed with anyone
how to obtain or keep some type of health insurance coverage as their adolescent becomes an adult. Moreover, children and youth with multiple health care needs represent a major source of morbidity and resource utilization, accounting for 42% of all medical costs for children.52 The 2010 Patient Protection and Affordable Care Act improved the health insurance coverage for YYASHCN through age 25 years, delaying the problem of lost medical insurance. For example, since the implementation of the Patient Protection and Affordable Care Act in 2010, having a usual source of care decreased the most for 26- to 34-year-olds.53 Incorporation of transition planning tools into the electronic medical record could facilitate health care transition by improving pediatric primary care and subspecialists’ knowledge and skills in transition planning. However, without technical assistance from designated personnel and time in the clinic to facilitate this, documented transition planning may not occur. Methods to improve health care transition at the hospital level could include improved care coordination. Business models to support this work must be established.54 Care coordination is associated with less forgone care, improved clinical status, and overall cost savings, which should be shared with the practice that does the coordination to help reduce the currently unreimbursed costs associated this activity.55,56 This is an example of improved financing of effective methods of health care transition that could be sustainable.4,54 Pediatric hospitals should establish health care transition programs. Even though the funding models for this are not well established, government and commercial payer expectations around quality metrics for health care transition could drive resources to these efforts, promoting change in clinical practice and service delivery. In addition, at the hospital level, discussions should take place to establish partnerships with adult hospital systems to ensure that once patients and families are adequately prepared for transition, there are systems in place to receive them into adult care.
Summary For over 25 years, with medical advances increasing the lifespan of YYASHCN, we have been aware of the need to improve health care transition to adult-based care services. Barriers to health care transition have been identified and in a number of settings, recognition of the problem and preliminary success has been achieved for pilot programs. Evidence-based solutions to improve health care transition for YYASHCN are needed. There are barriers at the patient, family, pediatric, and adult provider, and insurance system levels that must be overcome. n Submitted for publication Apr 14, 2015; last revision received Jul 13, 2015; accepted Aug 3, 2015. Reprint requests: Albert C. Hergenroeder, MD, Baylor College of Medicine, Texas Children’s Hospital 6701 Fannin St, Suite 1710, Houston, TX 77030. E-mail: [email protected]
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References 1. US Department of Health and Human Services HRaSA, Maternal and Child Health Bureau. National Survey of Children with Special Health Care Needs Chart book 2009-2010. Rockville, MD: US Department of Health and Human Services; 2013. 2. Mark TL, Buck JA. Characteristics of U.S. youths with serious emotional disturbance: data from the National Health Interview Survey. Psychiatr Serv 2006;57:1573-8. 3. American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians-American Society of Internal Medicine. A consensus statement on health care transitions for young adults with special health care needs. Pediatrics 2002;110:1304-6. 4. Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics 2002;110:1307-14. 5. Bloom SR, Kuhlthau K, Van Cleave J, Knapp AA, Newacheck P, Perrin JM. Health care transition for youth with special health care needs. J Adolesc Health 2012;51:213-9. 6. Lotstein DS, 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:e145-52. 7. McManus MA, Pollack LR, Cooley WC, McAllister JW, Lotstein D, Strickland B, et al. Current status of transition preparation among youth with special needs in the United States. Pediatrics 2013;131:1090-7. 8. Lugasi T, Achille M, Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated meta-summary of quantitative and qualitative studies. J Adolesc Health 2011;48:429-40. 9. Reiss JG, Gibson RW, Walker LR. Health care transition: youth, family, and provider perspectives. Pediatrics 2005;115:112-20. 10. Yang HL, Chen YC, Wang JK, Gau BS, Moons P. An evaluation of disease knowledge in dyads of parents and their adolescent children with congenital heart disease. J Cardiovasc Nurs 2013;28:541-9. 11. Cystic Fibrosis Foundation Patient Registry. 2014 Cystic Fibrosis Foundation edition. Bethesda, MD: 2013 Annual Data Report; 2013. 12. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between pediatric and adult healthcare: a systematic review. Arch Dis Child 2011; 96:548-53. 13. Chi DL. Medical care transition planning and dental care use for youth with special health care needs during the transition from adolescence to young adulthood: a preliminary explanatory model. Matern Child Health J 2014;18:778-88. 14. National Research Council. Improving Access to Oral Health Care for Vulnerable and Underserved Populations. Washington, DC: The National Academies Press; 2011. 15. Betz CL, Ferris ME, Woodward JF, Okumura JF, Jan S, Wood DL. The health care transition research consortium health care transition model: a framework for research and practice. J Pediatr Rehabil Med 2014;7:3-15. 16. Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics 2011;128: 182-200. 17. Williams RG. Transitioning youth with congenital heart disease from pediatric to adult health care. J Pediatr 2015;166:15-9. 18. Got Transition [Internet]. Health Care Providers; 2014-2015. http:// www.gottransition.org/. Accessed March 6, 2015. 19. Applebaum MA, Lawson EF, von Scheven E. Perception of transition readiness and preferences for use of technology in transition programs: teens’ ideas for the future. Int J Adolesc Med Health 2013;25:119-25. 20. Wiener LS, Kohrt BA, Battles HB, Pao M. The HIV experience: youth identified barriers for transitioning from pediatric to adult care. J Pediatr Psychol 2011;36:141-54. 21. Olsen DG, Swigonski NL. Transition to adulthood: the important role of the pediatrician. Pediatrics 2004;113:e159-62. 22. Family Voices [Internet]. Family Voices; 2013. http://www.familyvoices. org/. Accessed March 13, 2015. 1200
Vol. 167, No. 6 23. Perrin JM, Romm D, Bloom SR, Homer CJ, Kuhlthau KA, Cooley C, et al. A family-centered, community-based system of services for children and youth with special health care needs. Arch Pediatr Adolesc Med 2007;161:933-6. 24. Van Deyk K, Pelgrims E, Troost E, Goossens E, Budts W, Gewillig M, et al. Adolescents’ understanding of their congenital heart disease on transfer to adult-focused care. Am J Cardiol 2010;106:1803-7. 25. Scal P, Horvath K, Garwick A. Preparing for adulthood: health care transition counseling for youth with arthritis. Arthritis Rheum 2009; 61:52-7. 26. Doerr M, Edelman E, Gabitzsch E, Eng C, Teng K. Formative evaluation of clinician experience with integrating family history-based clinical decision support into clinical practice. J Pers Med 2014;4:115-36. 27. Scal P. Transition for youth with chronic conditions: primary care physicians’ approaches. Pediatrics 2002;110:1315-21. 28. Sawicki GS, Lukens-Bull K, Yin X, Demars N, Huang IC, Livingood W, et al. Measuring the transition readiness of youth with special healthcare needs: validation of the TRAQ—Transition Readiness Assessment Questionnaire. J Pediatr Psychol 2011;36:160-71. 29. Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs Outlook 2013;61:311-36. 30. Flanagan ME, Ramanujam R, Doebbeling BN. The effect of providerand workflow-focused strategies for guideline implementation on provider acceptance. Implement Sci 2009;4:71. 31. McManus M, White P, Barbour A, Downing B, Hawkins K, Quion N, et al. Pediatric to adult transition: a quality improvement model for primary care. J Adolesc Health 2015;56:73-8. 32. Hergenroeder AC, Benson PA, Britto MT, Catallozzi M, D’Angelo LJ, Edman JC, et al. Adolescent medicine: workforce trends and recommendations. Arch Pediatr Adolesc Med 2010;164:1086-90. 33. Harris MA, Freeman KA, Duke DC. Transitioning from pediatric to adult health care: dropping off the face of the earth. Am J Lifestyle Med 2011;5:85-91. 34. Okumura MJ, Kerr EA, Cabana MD, Davis MM, Demonner S, Heisler M. Physician views on barriers to primary care for young adults with childhood-onset chronic disease. Pediatrics 2010;125:e748-54. 35. Okumura MJ, Heisler M, Davis MM, Cabana MD, Demonner S, Kerr EA. Comfort of general internists and general pediatricians in providing care for young adults with chronic illnesses of childhood. J Gen Intern Med 2008;23:1621-7. 36. Watson AR. Non-compliance and transfer from pediatric to adult transplant unit. Pediatr Nephrol 2000;14:469-72. 37. Edwards S, Rana F. Sickle cell disease: the transition from pediatric to adult providers. Northeast Florida Med J 2008;59:48-54. 38. van Staa AL, Jedeloo S, van Meeteren J, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev 2011;37:821-32. 39. van der Lee JH, Mokkink LB, Grootenhuis MA, Heymans HS, Offringa M. Definitions and measurement of chronic health conditions in childhood: a systematic review. JAMA 2007;297:2741-51. 40. Toomey SL, Chien AT, Elliott MN, Ratner J, Schuster MA. Disparities in unmet need for care coordination: the national survey of children’s health. Pediatrics 2013;131:217-24. 41. Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health 2015;56: 612-8. 42. Oswald DP, Gilles DL, Cannady MS, Wenzel DB, Willis JH, Bodurtha JN. Youth with special health care needs: transition to adult health care services. Matern Child Health J 2013;17:1744-52. 43. Borromeo GL, Bramante G, Betar D, Bhikha C, Cai YY, Cajili C. Transitioning of special needs paediatric patients to adult special needs dental services. Aust Dent J 2014;59:360-5. 44. Dugueperoux I, Tamalet A, Sermet-Gaudelus I, Le Bourgeois M, Gerardin M, Desmazes-Dufeu N, et al. Clinical changes of patients with cystic fibrosis during transition from pediatric to adult care. J Adolesc Health 2008;43:459-65.
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December 2015 45. Miles K, Edwards S, Clapson M. Transition from paediatric to adult services: experiences of HIV-positive adolescents. AIDS Care 2004;16:305-14. 46. Javalkar K, Fenton N, Cohen S, Ferris M. Socioecologic factors as predictors of readiness for self-management and transition, medication adherence, and health care utilization among adolescents and young adults with chronic kidney disease. Prev Chronic Dis 2014; 11:E117. 47. Huang JS, Gottschalk M, Pian M, Dillon L, Barajas D, Bartholomew LK. Transition to adult care: systematic assessment of adolescents with chronic illnesses and their medical teams. J Pediatr 2011;159:994-8.e2. 48. Okumura MJ, Hersh AO, Hilton JF, Lotstein DS. 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. J Adolesc Health 2013;52:413-8. 49. Callahan ST. Bridging the gaps in health insurance coverage for young adults. J Adolesc Health 2007;41:321-2. 50. Garvey KC, Wolpert HA, Laffel LM, Rhodes ET, Wolfsdorf JI, Finkelstein JA. Health care transition in young adults with type 1 diabetes: barriers to timely establishment of adult diabetes care. Endocr Pract 2013;19:946-52.
MEDICAL PROGRESS 51. Goudie A, Carle AC. Ohio study shows that insurance coverage is critical for children with special health care needs as they transition to adulthood. Health Aff (Millwood) 2011;30:2382-90. 52. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med 2005;159:10-7. 53. Kotagal M, Carle AC, Kessler LG, Flum DR. Limited impact on health and access to care for 19- to 25-year-olds following the Patient Protection and Affordable Care Act. JAMA Pediatr 2014;168: 1023-9. 54. Parrish MM, O’Malley K, Adams RI, Adams SR, Coleman EA. Implementation of the care transitions intervention: sustainability and lessons learned. Prof Case Manag 2009;14:282-93. 55. Holmes-Walker D, Llewellyn A, Farrell K. A transition care programme which improves diabetes control and reduces hospital admission rates in young adults with type 1 diabetes aged 15-25 years. Diabet Med 2007;24: 764-9. 56. Van Walleghem N, Macdonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care 2008;31:1529-30.
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C
hronic disease in 6- to 21-year-olds affects approximately 1 in 5 US families.1 Advances in medicine have improved the outcome for children with chronic illnesses; in the US, 90% of children and youth with special health care needs of a physical nature will enter adulthood, numbering one-half million annually. An estimated additional 600 000 16- to 17-year-olds in the US have serious mental illness.2 In this review, we will include chronic physical, mental, and behavioral illnesses as special health care needs and will combine children, adolescents, and young adults under the umbrella term, youth and young adults with special health care needs (YYASHCN).3,4 A 2002 Consensus Statement3 identified multiple deficiencies in health care transition, including: (1) YYASHCN are not prepared for health care transition; (2) pediatric health care providers are not prepared to assist in transition readiness for YYASHCN and their families; (3) inadequate communication between the subspecialty and medical home providers; and (4) an adult health care system not adequately prepared to receive young adults with special health care needs. Despite increased attention to the importance of health care transition from pediatric to adult-based care, progress in addressing these barriers has been slow. Increased morbidity and mortality have been reported in the post-transition period if the transition is poorly managed, and those with complex conditions and neurocognitive disabilities tend to do worse.5 The goal of this article is to briefly describe the broad issues of health care transition from pediatric to adult-based care and opportunities for improvement.
Health Care Transition Planning Is Not Occurring as a Standard of Care In 2009 the term “core transition outcome” was coined to describe key elements in successful health care transition planning for YYASHCN, to include having discussions with a health care provider about future adult health care needs, such as finding an adult provider and securing health insurance, and encouraging young adults to take more responsibility for their care.6 Forty-one percent of parents of YYASHCN reported that this core outcome was met with no reported discernable improvement between 2005 and 2010.7 Similarly, transitioning youth report they did not receive health care transition counseling8 and did not know enough about the transition in advance.9 In one study,
YYASHCN
Youth and young adults with special health care needs
39% of adolescents with congenital heart disease and 51% of their parents had adequate knowledge of their disease.10 Impoverished and ethnic minority youth are less likely to report receiving transition preparation,7 which can contribute to health disparities. Across many disease conditions, improvement is needed in methods to facilitate transition readiness in pediatric care and in the readiness of adult health care systems to provide care for YYASHCN.11 There is little evidence to inform what structures and processes facilitate successful transition to adult-based care. Having the patient meet the adult provider before the actual transition to adult care improves success.5,8 Most studies evaluating transitional care have been for patients with diabetes mellitus with existing evidence supporting the use of educational programs for transition-age patients, transition coordinators, joint pediatric and adult clinics, specific young adult clinics, after hours phone support, and enhanced follow-up after transition.8,12 Given the associations between oral and systemic health, this applies to dental care as well, especially for YYASHCN who are at risk for poor dental health compared with peers without special health care needs.13,14 Thus, there are individual patient, family, medical practice, hospital, and system level opportunities for improvement that could contribute to better health care transition.15
Preparing Youth and Families for Transition Adolescence is a period of profound cognitive, emotional, and physical maturation that can be altered by a chronic illness.4 The interface between adolescent development and a chronic illness should be addressed in health care transition planning while recognizing that young adults are developmentally different than both younger children and older adults. Many YYASHCN and their families have built a trusting relationship with their pediatrician and are ambivalent about transferring to adult-based care.8 It is also difficult for pediatricians to let go.4 This relationship exists with pediatric dentists as well, many of whom are
From the 1Baylor College of Medicine, Houston, TX; and 2University of Alabama at Birmingham Children’s of Alabama, Birmingham, AL Supported by the Office of Title V & Family Health, Texas Department of State Health Services, using Title V Maternal and Child Health Services Block Grant Funds (2014004647/0009819A), the Health Resources and Services Administration (HRSA) of the US Department of Health and Human Services (HHS) (D70MC23045). The findings in this article are that of the authors and should not be construed as the official position or policy of, nor should any endorsements be inferred by. HRSA, HHS, or the US Government. The authors declare no conflicts of interest. 0022-3476/$ - see front matter. Copyright ª 2015 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.jpeds.2015.08.005
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Vol. 167, No. 6 December 2015 providing care for patients in their 40s.13 Planning should start years before the expected transfer.16 It is important to distinguish between health care transition eligibility and readiness. Many systems of care approach health care transition based on eligibility, often using age (eg, 18 years), insurance criteria, high school graduation, or becoming pregnant as criteria for transition. However, these criteria may be unrelated to health care transition readiness and their use could exacerbate existing health disparities. Health care transition readiness can be facilitated by early planning, including a written health care transition plan by age 14 years, and acquiring a set of core competencies composed of the essential knowledge and skills needed to self-manage.16-18 Operational definitions of health care transition readiness have begun to be established and imply being able to navigate the adult health care system. Having basic disease management knowledge and skills is a starting point yet is different from understanding the disease process.19 Youth with HIV have identified the need for increased continuity of care, assistance with logistics, improved communication between providers and caregivers, and individualized management of their transition process.20 Families and YYASHCN need to initiate conversations about health care transition planning at an early age, even before formal transition planning occurs.21 Families should be encouraged to accept the transfer of health care management and decision-making to transition-ready youth or their trusted health surrogate, as the parents will not be able to play this role indefinitely. Activities that facilitate planning include facilitated networking with families who have children with similar illnesses and using formal and information organizations, such as Family Voices.22 There is a need to improve family and patient-centered care.23 Although families are legally spokespersons for children until the age of majority, health care decisions often are made without involvement of the youth through an “assent to consent” process. In many cases, no discussion occurs nor is the youth given the opportunity to practice informed decision-making via the assent to consent process. As YYASHCN mature, these skills should be taught. Most families are neither trained nor encouraged to transfer knowledge and skills, first as a teacher, then as mentor to the youth. Lack of disease-specific knowledge among YYASHCN is associated with parent education level.24 The range of support required by the youth, with or without special health care needs, will depend on the young person’s health status and cognitive level. Once the youth reaches age 18 years, the decision-maker can range from the patient him/herself, the parent/caregiver as temporary or partial health care surrogate/power of attorney in specific health areas, to full-time support via different levels of guardianship. Only one-half of primary care providers routinely invite the parents out of the room to discuss confidential issues with adolescents.25 Yet this time is essential for YYASHCN to develop confidence as self-advocates. There is a shared responsibility between pediatric health care providers and families to prepare for the difference between pediatric and
adult-based care and to delineate the roles of the youth, family and providers.8 In fact, a family history collection and clinical decision support tool was noted to have positive effects on patient care, including increases in quality, personalization of care, and patient engagement in primary care.26 Increasing awareness among the YYASHCN’s family that health care transition to adult-based care is a desirable outcome is to be encouraged.4
Training Pediatric Health Care Providers and Preparing Pediatric Systems of Care to Plan for Health Care Transition Pediatric providers and pediatric systems of care need to be better prepared to facilitate health care transition4,27 and be willing to adopt health care transition as part of their practice. In part, this is related to the competencies of pediatricians that extend through age 21 years: just as adult physicians may not be trained in some pediatric diseases, pediatricians are not trained in many adult diseases. Likewise, in spite of many YYASHCN being seen by pediatric dentists, they are not equipped to provide adult-centered care such as dentures, permanent crowns, and implants.13 A patient’s desire to be more responsible for their health care, by gaining a sense of control over their health, should precede transfer of care from the pediatric provider. Specific skills include scheduling appointments, talking to their doctor alone, and “wanting to be taken more seriously” by their physicians. Encouraging the patient to form a partnership with the pediatric provider and to exercise shared decision making for medical care will require a shift for many physicians. Youth report that health care transition planning was facilitated when they were viewed as a partner in the discussion.28 Pediatric providers and their practices could improve in a core group of knowledge, skills, and practices regarding health care transition planning, and enhance the sense of partnership with the patient, including being more receptive to their needs.27,29 These include inviting the parent out of the room and encouraging patients to ask questions about and be involved in decisions about their medical care. In addition, the use of new or interactive (nonprint) media with patient information designed for youth and young adults has been associated with improving patient’s knowledge, self-care, and transition readiness, and reducing dropout rates after health care transition to adult-based care.8 Transition-age teens have voiced a desire for support groups with other teens, a preference for using text messaging for communication, and a desire for an online health management program.19 To present transition as a normative event, a written transition policy should be discussed with patients and families, opening the door for families to be asked about their expectations of transition.8 Lists of contact information for adult providers whom the pediatric provider endorses and to whom the patient could be referred could facilitate the identification of a specific provider that the youth can contact.8 If possible, the name and contact information of a 1197
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person who can help with questions during the transition period should be provided and a visit where the pediatric and adult provider are jointly present should be arranged.8 New guidelines for health care transition planning in the pediatric medical home have been published.16 The subsequent transfer of this additional knowledge will require implementation science methods and recognition of the factors associated with provider uptake of guidelines, including electronic medical record-based technologies.30 Pediatricians report lack of time as a barrier to transition planning, yet health care transition planning can be done by many health care providers with training, including nurses, social workers, case managers, and mental health, occupational, and physical therapists.16 Guidelines exist for when to start and what to include in health care transition planning,18 but their operationalization, in terms of workflow, patient, family, and provider satisfaction, needs to be established. Electronic medical record transition planning tools have been proposed for primary care settings, yet their functionality remains to be established,31 although some are currently being implemented in primary care and subspecialty settings (eg, Helping Patients Plan the Transition from Pediatric to Adult-Based Care, an Epic Clinical Program available for download on the Epic UserWeb). There is a validated measure of health care transition readiness.28 Preparing the current and next generation of pediatric providers to facilitate health care transition will require an investment in training methods for all disciplines. Required rotations in adolescent medicine for internal medicine and family medicine residents could improve their knowledge and skills in caring for all adolescents.32 Better training in pediatric onset conditions and reproductive health issues for YYASHCN for adult providers is needed.33 Introduction of curricula to teach health care transition knowledge and skills via continuing education courses and into medical school and residency, nursing, social work, and psychology training curricula is needed. This knowledge and skillset should be addressed during the required adolescent medicine rotation for pediatric and medicine-pediatric residents. A similar requirement could facilitate these skills for other adult care providers.32
Preparing Adult Health Care Systems to Increase Their Capacity for YYASHCN Adult health care providers need to be better prepared to facilitate health care transition.4,9,27 The majority of internists are not comfortable providing primary care for young adults with chronic illnesses of childhood origin; they report lack of time and reimbursement and lack of transition coordinators, as impediments to providing primary care to transitioning patients.27,31,34,35 Effective strategies to engage adult health care systems in the care of YYASHCN are needed. Even if YYASHCN are prepared to transition into adult health care, there is a lack of availability of adult providers at the community level.16,27 YYASHCN are a major source of morbidity as many of their conditions will 1198
Vol. 167, No. 6 persist or worsen during adulthood, requiring recognition and treatment by adult providers. The lack of protocols for or experience in treating YYASHCN, the lack of appropriate medical equipment, for example, for treating adults <40 kg, and the need for more active engagement in care coordination by YYASHCN are addressable barriers to quality care.35,36 Physicians perceive care as having high quality when office systems are established to improve health care transition coordination.34 Suggestions to facilitate health care transition into the adult practice include identifying the responsible party for medical decision making, explaining unambiguous consent and confidentiality policies, and communicating office policies for medication refills and after-hours care.16 According to patients, successful transition after the referral to an adult clinic would be facilitated by longer visits, more frequent visits after the initial visit, and a mentor who has been through the transition.37 Patients were reassured about the qualifications of the adult care provider to whom they were being transferred when their pediatric provider expressed trust in that provider.8
Enhancing Communication between Pediatric and Adult Systems of Care There is a need for improved communication between pediatric and adult health care providers.38 A current medical record abstract or summary available to the patient via a portal in the electronic medical record, delivered to the adult provider by the patient at the first visit, or sent directly by the pediatric practice in advance would be a marker for improved communication between pediatric and adult providers and between the patient, family, and the adult provider, and reduce inaccuracies attributed to YYASHCN describing their medical history without an adult present.39 There is a lack of communication/coordination at many levels: between the pediatric generalist and the pediatric subspecialist; the pediatric and adult generalists; the pediatric and adult subspecialists; between the patient and their family; and between the patient/family and their pediatric and adult providers. The lack of good coordination between pediatric and adult services was identified as the most important key element in transition programs by an international expert panel and has been identified by parents.40,41 Good coordination is more than a good transfer. Transfer is common but successful transition is infrequent, occurring in 22% of YYASHCN.42 Methods to improve coordination could include starting the planning early relative to the timing of the actual transfer of care. The American Academy of Pediatrics Consensus statement suggests that transition planning start by age 12 years. Starting at least one year prior to the actual transfer is suggested as a minimum by an international expert panel.41 Additional general principles of coordination include always involving the patient and family in planning and identifying a specific adult provider. Patients want the name and contact information of a provider, not just the Hergenroeder, Wiemann, and Cohen
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December 2015 clinic name. Methods should be established that facilitate pediatric and adult practices working together, so that each patient transitioned is not a new undertaking, as much as a transition of care between two teams with an existing relationship. Good coordination could start with the patient having a medical home, as YYASHCN with medical homes have a greater chance of transition planning than those without a medical home.7 The improved coordination could be manifest as direct oral and written communication between pediatric and adult providers. The majority of Australian pediatric dentists provide a written referral to their adult or special needs dentist counterpart and 32% followed up on the referral.43 Face-to-face meetings between adult and pediatric providers in the presence of the patient/family, such as when the adult provider can attend a pediatric clinic visit before the transfer, have been associated with improved transition5, or when a pediatric provider/navigator/coordinator can accompany the patient to their initial adult visit. A follow-up mechanism to indicate if the coordination was effective, such as having a follow-up pediatric visit after the initial adult visit, having written and/ or verbal communication from the adult to the pediatric provider that the patient arrived in the clinic with all the necessary information, or indicating what information is needed, could be useful. Having the pediatric specialist remain involved as a consultant may improve the likelihood of successful transition. Many patients get lost to care or forgo care if coordination is lacking, indicating that improved methods, such as social media, to track patients and remain involved with and assist them in this vulnerable period, are needed. Finally, the transfer should allow flexibility, tailored to the needs of the patient and the family,41 and be completed when patients are medically stable and have completed treatment protocols. Patient characteristics associated with satisfaction and good adherence after transfer include developmental maturity, older age, and consent to the transfer.44,45
Developing Financing for Sustaining a Continuum of Care across Adolescence to Young Adulthood for YYASHCN Insurance status is a predictor of readiness for selfmanagement.46 Providers identify lack of insurance as a barrier to health care transition.47 Having insurance and family income are positively associated with using dental care and represents an important health disparity.13 Patients often lose medical and dental insurance when they reach 19-26 years of age. Having public insurance or switching from private to public insurance also has been associated with higher rates of loss of insurance.48 Until 2010, over one-half of young adults with chronic illnesses reported gaps in insurance coverage, with an average gap of 15 months.49 Gaps in insurance coverage can lead to forgone care and adverse consequences.50,51 There are concerns about the lack of or poor reimbursement for services, but fewer than 1 in 5 parents report having discussed with anyone
how to obtain or keep some type of health insurance coverage as their adolescent becomes an adult. Moreover, children and youth with multiple health care needs represent a major source of morbidity and resource utilization, accounting for 42% of all medical costs for children.52 The 2010 Patient Protection and Affordable Care Act improved the health insurance coverage for YYASHCN through age 25 years, delaying the problem of lost medical insurance. For example, since the implementation of the Patient Protection and Affordable Care Act in 2010, having a usual source of care decreased the most for 26- to 34-year-olds.53 Incorporation of transition planning tools into the electronic medical record could facilitate health care transition by improving pediatric primary care and subspecialists’ knowledge and skills in transition planning. However, without technical assistance from designated personnel and time in the clinic to facilitate this, documented transition planning may not occur. Methods to improve health care transition at the hospital level could include improved care coordination. Business models to support this work must be established.54 Care coordination is associated with less forgone care, improved clinical status, and overall cost savings, which should be shared with the practice that does the coordination to help reduce the currently unreimbursed costs associated this activity.55,56 This is an example of improved financing of effective methods of health care transition that could be sustainable.4,54 Pediatric hospitals should establish health care transition programs. Even though the funding models for this are not well established, government and commercial payer expectations around quality metrics for health care transition could drive resources to these efforts, promoting change in clinical practice and service delivery. In addition, at the hospital level, discussions should take place to establish partnerships with adult hospital systems to ensure that once patients and families are adequately prepared for transition, there are systems in place to receive them into adult care.
Summary For over 25 years, with medical advances increasing the lifespan of YYASHCN, we have been aware of the need to improve health care transition to adult-based care services. Barriers to health care transition have been identified and in a number of settings, recognition of the problem and preliminary success has been achieved for pilot programs. Evidence-based solutions to improve health care transition for YYASHCN are needed. There are barriers at the patient, family, pediatric, and adult provider, and insurance system levels that must be overcome. n Submitted for publication Apr 14, 2015; last revision received Jul 13, 2015; accepted Aug 3, 2015. Reprint requests: Albert C. Hergenroeder, MD, Baylor College of Medicine, Texas Children’s Hospital 6701 Fannin St, Suite 1710, Houston, TX 77030. E-mail: [email protected]
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