Adolescent Health Care Transition in Transition

Abstract

Transitions of care areperiods of vulnerability and risk in our health care system. The risks for poor clinical outcomes and increased health care costs during transitions increase with poor preparation, planning, communication, and coordinationof care aspatientsmove fromonecare setting to another.1 To a large extent, researchers and policy makers have focused on the care transitions in and out of hospital settings of olderadultpatientswithchronicconditions.However, the transition from pediatric primary and specialty care to adultfocusedcarepresents amore complexarrayof challengeswith life-long consequences. The adolescent transition to adult care is embedded in a larger life course transition to the independence and responsibilities of adulthood, the period fraught with risk and challenge. Furthermore, for youthwith special health care needs, this transition represents the culminationof 2decadesof apediatricmodel of preventive care, screening, anticipatory guidance, and chronic condition management. The steadily enhanced survival into adulthood and quality of life for youthwith chronic conditions highlight the overall qualityofpediatric care.2Onemight assume that after 20years of careful pediatric management the transfer of care to new adult providers and to a different adult model of care would be a seamless, safe, and satisfactory soft landing for every young adult patient. Unfortunately,anenormousbodyofnearlyunanimousevidence finds that most young adults in the United States with or without special health care needs experience no preparation,minimal andusually lastminuteplanning, andpoor communicationandcoordinationaroundtheactual transferofcare. A series of 3 national surveys of children with special health care needs continues to show 60% of youth and families fail to receive the supports needed for a successful transition to adult care.3 Surveyedpediatricians regard transition as amatter to be postponed to age 18 years and tend to provide little direct assistance with finding and coordinating transfer to a new adult care provider.4 Pediatricians regard adult providers as uncomfortable with childhood-onset chronic conditions (eg, cerebral palsy, cystic fibrosis, Down syndrome, and metabolic disorders) and complain of difficulty finding adult providers willing to take their patients. Adult providers find young adults poorly informed about their own health conditionsandtreatments,unreadytoaskquestions, andpoorlyprepared to manage their own health.5 And these adult providers freely admit that they are not trained and have little experience in the management of the mostly rare and often complex chronic conditionsof childhoodonset.6 Chronic conditions of childhood onset usually require pediatric specialty care frequently from multiple specialists, and it is clear that manyof these specialists donot have adult specialty counterparts (eg,metabolic disorders clinics) or their counterparts are not trained or interested in pediatric conditions (eg, cardiology, hematology, and neurology). Perhaps most distressing of all is emerging research suggesting that the health status of young adults with a variety of chronic conditions may deteriorate soon after they graduate from pediatric care. In some instances, use of emergency departments, hospitalizations, andevenmortality increase.7,8 Some of these results for young adults may be attributable to the natural progression of their diseases or other factors, but the circumstantial relationship to their departure from pediatric care cannot be ignored. Several parallel developments over recent years illuminate futureprospects forbetterhealthcare transitions foryouth and young adults as well as more clearly identified challenges. In 2011, 3 major national professional organizations— the American Academy of Pediatrics, the American Academy ofFamilyPhysicians, and theAmericanCollegeofPhysicians— throughamultidisciplinary joint authoring groupdrafted, endorsed, and published the clinical report “Supporting the HealthCareTransitionFromAdolescence toAdulthood in the Medical Home.”9 Expanding on earlier consensus standards published in 2002,10 this clinical report provides granular, algorithmic guidance to practitioners for the incorporation of transition support into encounters with patients throughout adolescence and young adulthood. While applicable to all youth and geared to primary care as the medical home, the guidance is intended for adaptation to specialty or conditionspecific settings as well. The clinical report provides a framework and roadmap for new interrelated health care transition agendas in quality improvement, research, education, andpolicy.Quality improvement offers evidence-basedmethods for the rapid incorporation and evaluation of new structures and processes of care into existing systems such as busy health care settings. Since July 2010, the US Maternal and Child Health Bureau–funded NationalHealthCareTransitionCenterGotTransitionhasdemonstrated successful implementation of its Six Core Elements ofHealth Care Transition into practice settings in 6 states and the District of Columbia using the Breakthrough Series learning collaborativemodel developedby the Institute forHealthcare Improvement (Table).11 The Six Core Elements were developed as direct extensions of the clinical report’s transition algorithm and provide 6 steps in the transition process on which to focus future health systems research. TheAmerican Board of Pediatrics, the American Board of Internal MediRelated article Opinion