Patience H. White

Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

Optimal health care is achieved when each person, at every age, receives medically and developmentally appropriate care. The goal of a planned health care transition is to maximize lifelong functioning and well-being for all youth, including those who have special health care needs and those who do not. This process includes ensuring that high-quality, developmentally appropriate health care services are available in an uninterrupted manner as the person moves from adolescence to adulthood. A well-timed transition from child- to adult-oriented health care is specific to each person and ideally occurs between the ages of 18 and 21 years. Coordination of patient, family, and provider responsibilities enables youth to optimize their ability to assume adult roles and activities. This clinical report represents expert opinion and consensus on the practice-based implementation of transition for all youth beginning in early adolescence. It provides a structure for training and continuing education to further understanding of the nature of adolescent transition and how best to support it. Primary care physicians, nurse practitioners, and physician assistants, as well as medical subspecialists, are encouraged to adopt these materials and make this process specific to their settings and populations.

Measuring the “Triple Aim” in Transition Care: A Systematic Review

BACKGROUND AND OBJECTIVES: Without adequate support, adolescents transitioning from the pediatric to the adult health care system are at increased risk for poor health outcomes. Numerous interventions attempt to improve this transition, yet few comprehensively evaluate efficacy. To advance evaluation methods and ultimately the quality of transition services, it is necessary to understand the current state of health care transition measurement. This study examines and categorizes transition measures by using the “Triple Aim” framework of experience of care, population health, and cost of care. METHODS: Ovid Medline and the Cumulative Index to Nursing and Allied Health Literature were searched for articles published between 1995 and 2013. Two reviewers independently screened studies and included those that evaluated the impact of a health care transition intervention. Measures were subsequently classified according to population health, experience of care, and costs of care. RESULTS: Of the 2282 studies initially identified, 33 met inclusion criteria. Population health measures were used in 27 studies, with disease-specific measures collected most frequently. Fifteen studies measured cost, most often service utilization. Eight studies measured experience of care, with satisfaction assessed most commonly. Only 3 studies examined all 3 domains of the “Triple Aim.” Transition interventions described in the gray literature were not reviewed. CONCLUSIONS: Transition programs are inconsistently evaluated in terms of their impact on population health, patient experience, and cost. To demonstrate improvement in the transition from pediatric to adult health care, a more robust and consistent set of measures is needed.

A systematic literature review of strategies promoting early referral and reducing delays in the diagnosis and management of inflammatory arthritis

Background Despite the importance of timely management of patients with inflammatory arthritis (IA), delays exist in its diagnosis and treatment. Objective To perform a systematic literature review to identify strategies addressing these delays to inform an American College of Rheumatology (ACR)/European League Against Rheumatism (EULAR) taskforce. Methods The authors searched literature published between January 1985 and November 2010, and ACR and EULAR abstracts between 2007–2010. Additional information was obtained through a grey literature search, a survey conducted through ACR and EULAR, and a hand search of the literature. Results (1) From symptom onset to primary care, community case-finding strategies, including the use of a questionnaire and autoantibody testing, have been designed to identify patients with early IA. Several websites provided information on IA but were of varying quality and insufficient to aid early referral. (2) At a primary care level, education programmes and patient self-administered questionnaires identified patients with potential IA for referral to rheumatology. Many guidelines emphasised the need for early referral with one providing specific referral criteria. (3) Once referred, early arthritis clinics provided a point of early access for rheumatology assessment. Triage systems, including triage clinics, helped prioritise clinic appointments for patients with IA. Use of referral forms standardised information required, further optimising the triage process. Wait times for patients with acute IA were also reduced with development of rapid access systems. Conclusions This review identified three main areas of delay to care for patients with IA and potential solutions for each. A co-ordinated effort will be required by the rheumatology and primary care community to address these effectively.

Children’s Health Insurance Program (CHIP): Accomplishments, Challenges, and Policy Recommendations

Sixteen years ago, the 105th Congress, responding to the needs of 10 million children in the United States who lacked health insurance, created the State Children’s Health Insurance Program (SCHIP) as part of the Balanced Budget Act of 1997. Enacted as Title XXI of the Social Security Act, the Children’s Health Insurance Program (CHIP; or SCHIP as it has been known at some points) provided states with federal assistance to create programs specifically designed for children from families with incomes that exceeded Medicaid thresholds but that were insufficient to enable them to afford private health insurance. Congress provided

Transitioning youth with rheumatic conditions: perspectives of pediatric rheumatology providers in the United States and Canada.

40 billion in block grants over 10 years for states to expand their existing Medicaid programs to cover the intended populations, to erect new stand-alone SCHIP programs for these children, or to effect some combination of both options. Congress reauthorized CHIP once in 2009 under the Children’s Health Insurance Program Reauthorization Act and extended its life further within provisions of the Patient Protection and Affordable Care Act of 2010. The purpose of this statement is to review the features of CHIP as it has evolved over the 16 years of its existence; to summarize what is known about the effects that the program has had on coverage, access, health status, and disparities among participants; to identify challenges that remain with respect to insuring this group of vulnerable children, including the impact that provisions of the new Affordable Care Act will have on the issue of health insurance coverage for near-poor children after 2015; and to offer recommendations on how to expand and strengthen the national commitment to provide health insurance to all children regardless of means.

A Primary Care Quality Improvement Approach to Health Care Transition

Objective. To assess North American pediatric rheumatology providers’ perspectives on practices, barriers, and opportunities concerning the transition from pediatric-centered to adult-centered care. Methods. Childhood Arthritis and Rheumatology Research Alliance (CARRA) members completed a 25-item survey assessing current transition practices, transition policy awareness, and transitional care barriers and needs. Results were compared to the American Academy of Pediatrics (AAP) 2008 survey on transitional care. Results. Over half (158/288, 55%) of CARRA members completed the survey. Fewer than 10% are very familiar with AAP guidelines about transition care for youth with special healthcare needs. Eight percent have a formal written transition policy, but 42% use an informal approach. Patient request (75%) most frequently initiates transfer to adult care. Two major barriers to transition are fragmented adult medical care and lack of sufficient time to provide services. Compared with AAP survey participants, pediatric rheumatology providers are significantly more likely to help youth find an adult specialist (63% vs 45%) and discuss confidentiality and consent before age 18 (45% vs 33%), but are less likely to help with medical summary creation (16% vs 27%) or find a primary care provider (25% vs 47%). Outcomes ranked as “very important” in defining a successful transition are survival (76%), seeing an adult rheumatologist within 6 months of final pediatric rheumatology visit (66%), and maintaining insurance coverage (57%). Conclusion. This comprehensive survey of North American pediatric rheumatology providers regarding transitional care practices demonstrates deficiencies in education, resources, and a formalized process. Respondents support development of standardized rheumatology-specific transition practices.

Using Registries to Identify Adverse Events in Rheumatic Diseases

In the US, 18% of all youth have a special health care need. These needs represent 80% of all health care expenditures for children.1,2 Most of these youth will survive into adulthood as productive community members and will receive their health care in an adult model of care. To reach that goal, transition should be thought of as an active process over time that addresses many aspects of the youth’s life, including medical, psychosocial, educational, and vocational needs, as they prepare to move from childto adult-centered health care.3 Transfer should be thought of as the act of moving from one provider to another or from one location to another.4, 5 Thus, the transition process is twofold for

Scope of Health Care Benefits for Children From Birth Through Age 26

The proven effectiveness of biologics and other immunomodulatory products in inflammatory rheumatic diseases has resulted in their widespread use as well as reports of potential short- and long-term complications such as infection and malignancy. These complications are especially worrisome in children who often have serial exposures to multiple immunomodulatory products. Post-marketing surveillance of immunomodulatory products in juvenile idiopathic arthritis (JIA) and pediatric systemic lupus erythematosus is currently based on product-specific registries and passive surveillance, which may not accurately reflect the safety risks for children owing to low numbers, poor long-term retention, and inadequate comparators. In collaboration with the US Food and Drug Administration (FDA), patient and family advocacy groups, biopharmaceutical industry representatives and other stakeholders, the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the Duke Clinical Research Institute (DCRI) have developed a novel pharmacosurveillance model (CARRA Consolidated Safety Registry [CoRe]) based on a multicenter longitudinal pediatric rheumatic diseases registry with over 8000 participants. The existing CARRA infrastructure provides access to much larger numbers of subjects than is feasible in single-product registries. Enrollment regardless of medication exposure allows more accurate detection and evaluation of safety signals. Flexibility built into the model allows the addition of specific data elements and safety outcomes, and designation of appropriate disease comparator groups relevant to each product, fulfilling post-marketing requirements and commitments. The proposed model can be applied to other pediatric and adult diseases, potentially transforming the paradigm of pharmacosurveillance in response to the growing public mandate for rigorous post-marketing safety monitoring.

Outcome Evidence for Structured Pediatric to Adult Health Care Transition Interventions: A Systematic Review

The optimal health of all children is best achieved with access to appropriate and comprehensive health care benefits. This policy statement outlines and defines the recommended set of health insurance benefits for children through age 26. The American Academy of Pediatrics developed a set of recommendations concerning preventive care services for children, adolescents, and young adults. These recommendations are compiled in the publication Bright Futures: Guidelines for Health Supervision of Infants, Children, and Adolescents, third edition. The Bright Futures recommendations were referenced as a standard for access and design of age-appropriate health insurance benefits for infants, children, adolescents, and young adults in the Patient Protection and Affordable Care Act of 2010 (Pub L No. 114–148).

A systematic literature review of strategies promoting early referral and reducing delays in the diagnosis and management of infl ammatory arthritis

Objective To identify statistically significant positive outcomes in pediatric‐to‐adult transition studies using the triple aim framework of population health, consumer experience, and utilization and costs of care. Study design Studies published between January 1995 and April 2016 were identified using the CINAHL, Ovid MEDLINE, PubMed, Scopus, and Web of Science databases. Included studies evaluated pre‐evaluation and postevaluation data, intervention and comparison groups, and randomized clinic trials. The methodological strength of each study was assessed using the Effective Public Health Practice Project Quality Assessment Tool. Results Out of a total of 3844 articles, 43 met our inclusion criteria. Statistically significant positive outcomes were found in 28 studies, most often related to population health (20 studies), followed by consumer experience (8 studies), and service utilization (9 studies). Among studies with moderate to strong quality assessment ratings, the most common positive outcomes were adherence to care and utilization of ambulatory care in adult settings. Conclusions Structured transition interventions often resulted in positive outcomes. Future evaluations should consider aligning with professional transition guidance; incorporating detailed intervention descriptions about transition planning, transfer, and integration into adult care; and measuring the triple aims of population health, experience, and costs of care.