Lucile Packard Foundation for Children’s Health Issue Brief May 2014 A Triple Aim Approach to Transition from Pediatric to Adult Health Care for Youth with Special Health Care Needs by Rachel Bensen, MD, MPH, Dana Steidtmann, PhD, and Yana Vaks, MD Abstract It is a triumph of modern medicine that over 90% of children with chronic illness now survive into adulthood. This also presents a new set of challenges, as adult health care systems struggle to find capacity to accommodate complex and vulnerable young adults with a variety of childhood onset chronic conditions. The number of these patients is growing; they are expected to live longer, and they account for a significant proportion of health care utilization and spending in their age group. These individuals face multiple challenges: developing into adults; living with chronic illness; and the difficulties associated with the transition between complex health systems. Emerging research suggests that young people fall through the cracks during the time of transition, with costly hospitalizations and, in some cases, devastating long- lasting health consequences. There appears to be a substantial opportunity to advance transition care in all three domains of the Institute for Healthcare Improvement’s Triple Aim framework: to improve clinical outcomes, improve patient, family and provider experiences and decrease per capita health care spending. In this Issue Brief, we describe key unmet needs regarding a) developing chronic disease self-management; b) enhancing capacity of the adult health care system to care for young adults with special health care needs; and c) reducing lapses in care during the transition period. Based on these unmet needs, we make recommendations for improving health care during transition that incorporate relevant high-value strategies for health care delivery. We also describe current challenges to improving care during the transition period, and suggest priorities for future research. Background The majority of children with chronic illness As adolescents and young adults with serious now survive into adulthood, and recent surveys chronic illness live longer, they are expected to indicate that 18% of young adults have a special move from pediatrics to adult-oriented health health care need.1 This is due in large part to care, a process that can be hazardous for this advances in modern medicine such as increased vulnerable group. Consensus statements on the survival of extremely premature infants,2 importance of providing high-quality transition expanded surgical options for patients with care from the American Academy of Pediatrics, congenital heart defects,3,4 and improved American Academy of Family Physicians, treatment of genetic disorders such as cystic American College of Physicians and numerous fibrosis5 and sickle cell disease.6 However, such other specialty organizations are now more than successes have created new challenges for a decade old.7,8 However, transition continues to patients and the health care system. be inadequately addressed, with 60% of young A Triple Aim Approach to Transition from Pediatric to Adult Health Care for Youth with Special Health Care Needs www.lpfch-cshcn.org people not receiving attention to core transition improving the health of the population, and issues.9 The transition period is also associated reducing per capita cost of health care. High- with negative and costly health outcomes. value health care combines Triple Aim concepts Examples of well-described health to maximize health outcomes achieved per deteriorations during the transfer period include dollar spent while maintaining a patient- poor glycemic control in those with Type I centered focus.18 diabetes,10 increased Transition continues to There is limited evidence on how to provide sickle cell crises,11 loss be inadequately high-value transition care. This is due in large of transplanted organs12 addressed, with 60% of part to the relatively small amount of published young people not and even death.13 In data regarding longitudinal cost of care for receiving attention to addition to the tragic adolescents and young adults during the core transition issues. consequences for these young individuals and transition period. However, several general their families, such health crises are expensive. principles of high-value health care have Health care utilization and spending for particular relevance: children, adolescents and young adults with  Team-based coordinated care. All team childhood onset chronic illness is substantial, members are valued and empowered to use concentrated among a relatively small their full set of skills and expertise (i.e., proportion of patients, and on the rise.14-16 For work at the top of their license), and there is example, a large analysis of utilization patterns clear accountability for various aspects of in children’s hospitals showed that just 3% of care.19-21 patients accounted for 22% of inpatient charges. Furthermore, odds of re-hospitalizations were  Population segmentation. Health care greater among adolescents and young adults interventions are tailored to individual when compared to younger children.16 Health patient and family needs. Patients are care transition is becoming an increasing stratified based on factors such as medical contributor to the crisis in US health care complexity and ability for self-management. spending. New strategies are needed for Segmentation is a patient- and family- providing high-quality, economically centered approach to care17,21,22 and sustainable health care during the transition increases efficiency. Services are directed to period. those who will benefit most.  Technology support tools. Telemedicine is defined as “the use of technologies to High-Value Care Principles remotely diagnose, monitor, and treat Applicable to Transition patients.”23 Telehealth is defined as “the The Institute for Healthcare Improvement has application of technologies to help patients popularized a “Triple Aim”17 framework, which manage their own illnesses through is a useful conceptual approach for improving improved self-care and access to education transition care. The framework focuses on and support systems.”23 Both have the enhancing a patient’s experience of care, potential to improve care quality and reduce A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 2 Youth with Special Health Care Needs Lucile Packard Foundation for Children’s Health cost. However, such tools must be Recommendations in Transition Care thoughtfully applied to ensure they address true needs in an efficient manner. Recommendation 1: Develop chronic disease self-management skills Successful transition to adult-oriented medical Unmet Needs in Transition Care care is contingent upon having strong disease self-management skills such as problem solving, One of the major challenges in addressing decision-making, forming partnerships with transition care for adolescents and young adults health care providers and taking action.24 with chronic illness is the heterogeneity of These skills can build self-efficacy for chronic childhood onset diseases and relatively low disease management, which has been linked to prevalence of specific conditions. However, improved health status and reduced health care many of the challenges reported by these young utilization.25,26 Specific strategies to improve people, their families and medical providers chronic disease self-management are during transition are common across diseases. summarized in Table 1. Three categories of unmet needs are particularly salient around the time of transition and transcend many medical conditions: Table 1. Strategies for developing chronic disease self-management skills  The need to improve chronic disease self- management  Identify who is likely to be primarily responsible for disease self-management in  The need to enhance capacity of the adult the future (i.e. patient vs. family) and health care system to care for young adults gradually transfer medical management with special health care needs from parent to young adult, when relevant*  Provide health coaching to develop self-  The need to reduce lapses in care during the efficacy and self-advocacy skills transition period  Address mental health co-morbidities negatively associated with treatment These common challenges create an opportunity adherence by routinely screening for and for identifying strategies to improve transition treating anxiety and depression care across disease states. The recommendations  Provide support for coping with chronic described in the next section apply high-value illness by linking young adults and family care principles to address common unmet needs. members to peer support and mentorship * Parents who have long been directing their child’s health care needs may have difficulty relinquishing control over health care decisions. For other young adults, such as those with cognitive impairment, parents may need to retain their role managing their child’s health. Thus, the ability to direct self- management strategies toward either a young person or parents/other caregivers may be particularly helpful. 3 A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 3 Youth with Special Health Care Needs www.lpfch-cshcn.org All three high-value principles are relevant to Table 2. Strategies for identifying and maximizing value in this domain. Health supporting the receiving care team through coaching may be conducted by trained lay transition and beyond people. Population segmentation would allow for targeted interventions to address self-  Begin identifying an appropriate receiving management and mental health concerns in team well in advance of transfer those who are most likely to benefit.  Facilitate communication between pediatric and adult care providers Thoughtfully applied technology can assist with screening and segmentation, increase access to  Offer a simple means of consultation between receiving clinical teams and services, and provide innovative means to experts in childhood onset conditions (e.g. support self-management. On-line or mobile telemedicine consults) programs may be particularly appealing to  Provide disease-specific educational young people. The potential impact of support for rare childhood conditions improving self-management in young people is  Ensure adequate care coordination for immense, as these skills may be used for many medically complex patients years into the future. Recommendation 2: Identify and support the Population segmentation and thoughtful receiving care team technology applications are relevant in this domain as well. Segmentation can be used to Significant differences in practice, knowledge identify adolescents and young adults who and culture exist between pediatric and adult require the greatest amount of support through providers. Identifying, engaging and educating the transition. Telemedicine offers a low-cost providers who will assume responsibility for a means to link families and community providers patient’s care may alleviate anxiety associated to subspecialists with expertise in rare childhood with transition for patients, families and health onset conditions. care professionals alike. Facilitating communication between the present and the Recommendation 3: Provide guidance to future care team can minimize lapses in care, patients and families as they move between resulting in improved health outcomes and health care systems experiences for patients. Key strategies for During transition, young adults and adolescents improving team-based care through the are required to move between two complex transition are summarized in Table 2. health care environments, a task that may be difficult even for highly engaged patients. Furthermore, transition is a time of heightened vulnerability requiring structured planning and coordination to avoid lapses in care. Transition to adulthood brings about many changes in addition to health care (e.g. school graduation, separation from parents, gaining independence) A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 4 Youth with Special Health Care Needs Lucile Packard Foundation for Children’s Health and coincides with a multitude of medical Conclusions service and provider changes (health insurance, ancillary services, suppliers of durable medical All too often, transition to adult care for equipment). Key strategies for successfully adolescents and young adults with chronic navigating through the transition are illnesses is plagued by inadequate preparation summarized in Table 3. for transfer, inability to find the right receiving providers and inadvertent lapses in care. Table 3. Strategies for navigating through Addressing these challenges calls for a the transition structured approach to transition, which involves setting clear expectations for the changes to come, providing continuity during  Create clear and transparent institutional and/or organizational policies and the time of transition, and establishing procedures for transition accountability for a safe landing in the adult  Set clear expectations with patients and medical system. In contrast to the current families with regard to transition practice of pushing patients out of pediatrics,  Designate a stable point-of-contact through this approach creates a pull system designed to transition bring prepared patients forward into adult- oriented care. Transition care must be  Ensure patients are prepared for transfer using a structured checklist of items to be accomplished in a cost-conscious manner in addressed (e.g., up-to-date medical order to be feasible and sustainable for already summary including a care plan, establishing overburdened health systems. To summarize, and learning to use a personal health record, identifying new providers) recommendations include:  Anticipate age-related medical insurance  Develop chronic disease-self management and service changes skills  Identify and support the receiving care team A collaborative, team-based approach is essential to provide services in an effective and  Provide guidance and support to patients and efficient manner. Trained lay-person navigators families as they move between systems can serve as the point-of-contact and oversee transition preparation. Technology can assist As these and other recommendations are applied with generating documents, sharing information, to transition care, and creating a personal health record (PHR). A careful evaluation will In contrast to the succinct and up-to-date PHR is an important allow timely current practice of tool to ensure that necessary information identification of lapses pushing patients out of pediatrics, this remains with the patient, when needed, at the in care and inform approach creates a pull point of care. further development system designed to of high-value bring prepared transition health care patients forward into policies. High adult-oriented care. priorities for future 5 A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 5 Youth with Special Health Care Needs www.lpfch-cshcn.org research include evaluating the effectiveness Rachel Bensen, MD, MPH, is a Clinical Fellow and cost impact of transition programs as well in Pediatric Gastroenterology, Hepatology, and as discerning patterns of health care costs and Nutrition at Stanford Children’s Health, and a health outcomes through the transition period. Postdoctoral Research Fellow at the Stanford Such evaluation is vital to improve transition in University Clinical Excellence Research Center. a manner that addresses all three elements of the triple aim: improving the health of the transition Dana Steidtmann, PhD, is a Licensed population, improving experience of care, and Psychologist, and Postdoctoral Research reducing health care costs. Fellow at the Stanford University Clinical Excellence Research Center. Yana Vaks, MD, is a Clinical Fellow in Pediatric Critical Care Medicine at Stanford Children’s Health, and a Postdoctoral Research Fellow at the Stanford University Clinical Excellence Research Center. A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 6 Youth with Special Health Care Needs Lucile Packard Foundation for Children’s Health References 1. Demographics on prevalence of CSHCN for children ages 12-17. 2014. (Accessed 1/17/2014, 2014, at http://childhealthdata.org/browse/survey/results?q=1792&g=376.) 2. Wilson-Costello D, Friedman H, Minich N, Fanaroff AA, Hack M. Improved survival rates with increased neurodevelopmental disability for extremely low birth weight infants in the 1990s. Pediatrics 2005;115:997-1003. 3. Moons P, Bovijn L, Budts W, Belmans A, Gewillig M. Temporal trends in survival to adulthood among patients born with congenital heart disease from 1970 to 1992 in Belgium. Circulation 2010;122:2264-72. 4. 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Self-management education: history, definition, outcomes, and mechanisms. Annals of behavioral medicine : a publication of the Society of Behavioral Medicine 2003;26:1-7. 25. Lorig KR, Ritter P, Stewart AL, et al. Chronic disease self-management program: 2-year health status and health care utilization outcomes. Medical care 2001;39:1217-23. 26. Lorig KR, Sobel DS, Ritter PL, Laurent D, Hobbs M. Effect of a self-management program on patients with chronic disease. Eff Clin Pract 2001;4:256-62. ABOUT THE FOUNDATION: The Lucile Packard Foundation for Children’s Health works in alignment with Lucile Packard Children’s Hospital and the child health programs of Stanford University. The mission of the Foundation is to elevate the priority of children’s health care through leadership and direct investment. The Foundation is a public charity, founded in 1997. CONTACT: The Lucile Packard Foundation for Children’s Health, 400 Hamilton Avenue, Suite 340, Palo Alto, CA 94301 cshcn@lpfch.org (650) 497-8365 A Triple Aim Approach to Transition from Pediatric to Adult Health Care for 8 Youth with Special Health Care Needs