Journal of Pediatric Rehabilitation Medicine: An Interdisciplinary Approach 7 (2014) 3–15 DOI 10.3233/PRM-140277 IOS Press

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The health care transition research consortium health care transition model: A framework for research and practice Cecily L. Betza,∗, Maria E. Ferrisb , Jason F. Woodwardc, Megumi J. Okumurad , Sophia Jane and David L. Woodf a

USC Keck School of Medicine, Los Angeles, CA, USA University of North Carolina, Chapel Hill, NC, USA c Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA d University of California, San Francisco, CA, USA e Perelman School of Medicine of the University of Pennsylvania, Philadelphia, PA, USA f College of Medicine, University of Florida, Gainesville, FL, USA b

Accepted 4 December 2013

Abstract. The body of health care transition (HCT) research is in the early stages of development. One of the major limitations of this developing field of research is the lack of theoretically-directed studies. This research limitation has hindered understanding of the variables contributing to successful HCT. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity and the relationships amongst variables that influence HCT outcomes among adolescents and emerging adults with special health care needs (AEA-SHCN). Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCN’s biopsychosocial HCT outcomes. This article provides a description of a health care transition theoretical model developed by the international and interdisciplinary Health Care Transition Research Consortium (HCTRC) that can be applied for testing in research and serve as a framework for clinical practice and policymaking. The HCTRC model is composed of four domains that are considered integral to the HCT phenomenon: Individual, Family/Social Support, Environment, and the Health Care System. The HCTRC model specifies the variables, processes, and potential mediators and moderators that affect the HCT outcomes. Keywords: Health care transition, theoretical framework, health care transition model, adolescents and emerging adults with special health care needs

1. The state of health care transition The increasing prevalence and survival rates of children with special health care needs (CSHCN) have resulted in a well-recognized need for effective health care transfer of care from pediatric to adult health care ∗ Corresponding author: Cecily L. Betz, University of Southern California, University Center of Excellence for Developmental Disabilities, Children’s Hospital Los Angeles. 4650 Sunset Blvd. Mailstop 53, Los Angeles, CA 90027, USA. Tel.: +1 323 361 8524; Fax: +1 323 361 8305; E-mail: [email protected].

and transition to adulthood that addresses the comprehensive needs for acquisition of developmental tasks. In 2001, it was estimated that 9.3 million (12.8%) children had a special health care need (SHCN). Comparatively, the 2009/2010 National Survey of Children with Special Health Care Needs (NS-CSHCN), estimates that 11.2 million (15.1%) children age 17 or younger have a SHCN. Advances in health care have also led to improvements in the survival rate of CSHCN, enabling over 90% to reach adulthood and well beyond an age where pediatricians normally care for their patients [1– 7]. Exemplifying the public health importance of HCT

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services, improving transition planning has been identified as a 2020 Healthy People objective [8]. Improvements in the survival rates of adolescents and emerging adults with pediatric-onset chronic conditions (hereafter referred to adolescents and emerging adults with special health care needs [AEA-SHCN]) have not been accompanied by desirable quality of life and health-related outcomes [9] The transition from pediatric-centered care to adult-focused care is associated with poor clinical outcomes, low patient satisfaction with the transition process, poor access to adult-focused health care services, and variable quality of adult-focused health care services [10–15]. Adverse health-related outcomes of AEA-SHCN reported in the developing body of literature include decline in disease self-management, increased risk for complications [16–18], deterioration of health status [19– 21], emergence of secondary conditions [22], and treatment-related late effects in emerging adults and adult survivors of childhood cancer [23–25]. Although there have been reports suggesting comparable outcomes of AEA-SHCN to general population peers, psychosocial morbidity risks are generally higher for AEA-SHCN. These morbidity risks include social delays and isolation, impaired social competence, and emotional problems such as depression [26]. Demographic lifestyle metrics of AEA-SHCN are lower when compared to the general population pertaining to rates of employment, level of education, socioeconomic status, social participation, and marital status [27–32]. Given these generally poor clinical outcomes, evidence-based health care transition (HCT) services are needed to improve outcomes as AEA-SHCN enter the adult-focused healthcare system. Evidence to support the application of HCT practice approaches is limited, despite being discussed in the literature for over two decades and the continuing significant unmet needs for HCT services and programs [33–37]. Unfortunately, comprehensive theoretical frameworks of the variables that influence HCT outcomes are lacking, which hinders understanding of the HCT phenomenon and the variables that are associated with successful HCT outcomes. A conceptual model that addresses the complex relationships amongst variables influencing AEASHCN HCT outcomes and that frames research and clinical practice is needed. The purpose of this paper is to present a HCT model, based upon a non-categorical (any diagnostic group of AEA-SHCN) approach, to help guide researchers, clinicians and policy makers. The model was developed by members of the interna-

tional and interdisciplinary Health Care Transition Research Consortium (HCT RC) conceptual model taskforce [38].

2. Current HCT research and conceptual models The body of HCT research is in the early stages of development as typified by the predominance of descriptive designs, small sample sizes, lack of control/comparison groups and focus on service and process measures, rather than AEA-SHCN outcomes [33, 35,39–41]. Few studies have been theoretically-directed [42]. These aforementioned research limitations have hindered understanding of the variables contributing to successful HCT. Evidence identifying how the variables moderate or mediate the domains addressed in the proposed HCT model and how they facilitate or hinder the outcomes for AEA-SHCN, regardless of their diagnostic-specific concerns, is lacking. The influence of predictor variables, such as individual characteristics of adolescent or emerging adults, is unknown. Even less is known about the influence of Family/Social Support, the Environment and the Health Care System on acquiring successful HCT outcomes. The inadequate understanding of HCT is due largely to the absence of an adequate conceptual model that addresses the complexity of the HCT process and the relationships amongst variables that influence HCT outcomes among AEA-SHCN. Existing conceptual models do not sufficiently address the significant interrelationships amongst variables to explain, predict and/or control AEA-SHCN’s biopsychosocial HCT outcomes. A number of limitations are evident in the current models of care to guide studies conducted with AEA-SHCN. Mid-level theories (theories of limited scope) have been applied to investigate service-related processes, such as provider-patient communication or patient behavioral responses to illness, and to study illness-related effects, such as pain and hospitalization. These studies have been conducted without exploration of these interrelationships with the process of HCT. Research pertaining to the treatment and care of AEASHCN has typically focused on disease-specific indicators or clinical outcomes. The lack of utilization of a comprehensive, non-categorical model has limited application of these studies’ findings to research or care involving other AEA-SHCN. Other models such as Meleis’ transition model and the Wagner Chronic Care Model have been adapted to pediatric populations but

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lack the developmental perspectives that are implicit in HCT. Age appropriate competencies that attend to the AEA developmental process include the dependenceindependence continuum, adoption of adult roles and responsibilities, the important and transforming role of families/community supports, and access to developmentally appropriate services or resources in both the child- and adult-focused systems [43–46]. The Life Course Health Development, although it provides an integrated approach in examining the relationship of health across the lifespan, is not specific to HCT [47]. Other models have been developed for quality improvement purposes which focus on time-limited and institutionally driven outcomes [48]. Few HCT specific theory papers are available for researchers, clinicians and policy makers. Wang’s review of the HCT literature suggests the ecological model as appropriate for research application [49]. The SMART transition readiness model, based upon socialecological theories is a recently introduced example of a mid-level framework [50]. Pediatric and child health service system supports for patients with pediatriconset chronic conditions are highly regulated up until age 21 at local, state, and federal levels. The different structure of these supports for young adults (> 21 years old) makes the health care system, state and local agencies and regulatory environment a significant component of HCT, which previous conceptual models have not explicitly addressed. Therefore, this paper expands beyond the current HCT theoretical frameworks for AEA-SHCN available, and presents a model developed for research, clinical and policy application.

3. Model development process The need for a conceptual model that encompasses the multiple dimensions of HCT for AEA-SHCN that could be used broadly across any health or behavioral condition, was raised in October 2009 during a workgroup meeting of the international and interdisciplinary Health Care Transition Research Consortium (HCTRC). Members of the HCTRC include health care professionals who are involved in HCT service, research, education/training or policy development as well as adolescents, emerging adults, or family members who are receiving HCT services and are committed to advance the science and improve practice. For details, see website: https://sites.google.com/site/ healthcaretransition/ (Box 1). The diversity of the HCTRC health care membership reflects the interdis-

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ciplinary framework of care required for HCT planning. Although the composition of HCT teams will vary dependent on the condition-specific needs, interdisciplinary members include some or all of the following disciplines: pediatric and adult primary and specialty care medicine, social nursing work, occupational therapy, physical therapy, nutrition, speech and language, and psychology. The members of the HCTRC acknowledged that a model specifically designed to conceptually and schematically represent the phenomenon of HCT was lacking and was needed to guide both service and research. Box 1 Health Care Transition Research Consortium The Health Care Transition Research Consortium (HCTRC) is an international and interdisciplinary group whose members share the mission commitment to promote and contribute to the development of evidence based practices and science in the field of health care transition for and adolescents and emerging adults with chronic medical conditions and disabilities. Unlike other specialty practice and research associations, the HCTRC membership includes adolescents, emerging adults and family members as authentic partners. The objectives of HCTRC are to: 1) develop and validate instruments pertinent for HCT assessment and outcome measurement; 2) promote and develop HCT training curriculums for interdisciplinary professionals, providers and consumers to improve practice and outcomes; 3) provide outreach training to HCT stakeholders that include interdisciplinary health care professionals and administrators, policymakers at the local, state and national levels and the consumer community on HCT best practices; and 4) promote the formulation of health care policies to support the development and implementation of HCT systems of care. Major activities of the HCTRC include virtual networking, telephonic and real-time workgroup meetings to facilitate HCT scholarly activities and the hosting of an annual HCTRC research symposium. More recently, HCTRC has entered into partnerships with the Chronic Illness and Disease Conference, Transition from Pediatric to Adult-focused Care, and formerly with the Got Transition? progam

Understanding the importance of model development to foster the advancement of the science, members of the HCTRC (hereafter referred to the HCTRC workgroup [WG]) volunteered to undertake this effort. The collective expertise of HCTRC WG was combined with an extensive search of HCT literature and theoretical models developed in complementary areas of practice, such as the Chronic Care Model [46, 51], Medical Home Model [48], Model of Healthcare Utilization [52], Complex Adaptive Systems and Systems Engineering [53–55], Modified Donabedian Quality of Care Model [56]. Life Course Health Development Model [47] and Meleis’ Transition Model [43, 44]. The HCTRC WG met during 2010 through 2013 via monthly conference calls and two in-face meetings.

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C.L. Betz et al. / The health care transition research consortium health care transition model Table 1 Key assumptions underlying domains Individual (AEA-SHCN) domain – HCT planning embodies a lifespan approach wherein children are supported throughout their development to achieve their highest level of functioning while learning to self-manage their condition; thereby enabling them to more easily achieve their goals for adulthood pertaining to the Individual, Family/Support, Environmental and Health Care System Domains. – AEA-SHCN needs, preferences and educational, vocational, lifestyle goals (self-determination) for successful adulthood are foremost in the development of health care transition planning and the transfer process. – The process of assessing needs and setting goals during HCT is further influenced by Family/Support, Environment and Health Care System Domains. – The developmental trajectory during HCT is characterized by the unpredictable transitions associated with the uncertain course of living with special health care needs and disabilities. – The acquisition of developmental competencies (related to physical, cognitive, emotional, and psychosocial developmental processes of adolescence and emerging adulthood), attained with the formalized process of health care transition planning initiated during early adolescence, is necessary for attaining the goals associated with emerging adulthood. – Adolescents with SHCN who reach the age of majority and AEA-SHCN who are emancipated become the primary decision makers for their health care decisions. – AEA-SHCN who are unable to independently manage their own health and health care will require a conservatorship to enable decisionmaking to be conducted on behalf of their needs for health care and lifestyle services. Family/Social support domain – Family members and/or members of the social support network require ongoing supportive services to fully participate in the health care transition planning. – Parents will need to go through a parallel transition process as they promote increasing autonomy for their child, while adjusting their monitoring of the AEA-SHCN’s appropriate disease management. Environment domain Community resources – Coordination of and connection to community based resources and services are essential components of health care transition planning. – Health care transition planning is based upon an interdisciplinary and interagency model of care. – Health care transitioning also includes involvement of schools and community, state and federal agencies (i.e. Medicaid waiver program, independent living programs, Supplemental Security Income [SSI]) to support transitions in health, education, employment, living situation, and social participation. Educational system – IEP planning requires the participation of school nurses or other health care professionals who can identify the health accommodations and services for AEA-SHCN. – While in the educational system, AEA-SHCN should receive appropriate educational and vocational supports to optimize future educational and vocational opportunities, independence and social participation. Health care system domain – Health care transition care starts with a adolescent/family centered framework and migrates to a adolescent-centered framework and throughout adolescence and emerging adulthood that depends on providing services that are evidence based and appropriate for the biopsychosocial developmental stage of the AEA-SHCN and his or her family/social and environmental supports. – Throughout transition all AEA-SHCN should have access to and receive quality pediatric and adult preventive, primary and specialty care. – All adolescents with SHCN require health care transition planning services and advocacy to successfully transition to emerging adulthood and transfer to adult-focused health care services. – Assessment of transition readiness is essential throughout the process of HCT to determining the degree and type of supports needed to facilitate successful health care transition. – Collaboration amongst professionals facilitates the development and implementation of the adolescent with SHCN individualized transition plan to facilitate achievement of their goals for emerging adulthood. – Key outcomes of health care transition planning include successful engagement with adult-focused health care providers, stable enrollment in a health insurance plan, acquisition and consistent application of self-management skills required for treatment adherence, acquisition and consistent application of self-advocacy skills, appropriate utilization of health care services, prevention of negative health outcomes and co-morbid conditions, optimal quality of life and achievement of individual goals in the areas of education, employment, and independent living. – Effective communication between pediatric- and adult-focused providers prior to transfer to the adult-focused practice is essential for effective transitioning. – AEA-SHCN are transferred to adult-focused providers who have the capacity to provide quality care for the specific health conditions of AEA-SHCN.

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Fig. 1. HCTRC HCT model.

Affected youth and families were engaged and provided input throughout the entire process.

4. Theoretical model domains and concepts The model delineates variables, HCT processes, and potential mediators and moderators that affect HCT outcomes. HCT outcomes are the developmental competencies of adulthood and effective integration into adult-focused health care services. Our model depicts four relevant domains, based upon a non-categorical approach, that mediate or moderate the AEA-SHCN’s

successful acquisition of the developmental competencies of adulthood and effective integration into adultfocused health care services (Table 1). These domains are the Individual, Family/Social Support, Environment, and the Health Care System. Each domain represents an area of conceptual focus that is integral to the phenomenon of HCT. A researcher may choose to test one or more domains of the model, such as the contextual (mediating) variables of the Family/Social Support and Individual Domains and their association with successful transition. However, the complex interaction of the other domains in affecting achievement of HCT outcomes needs to be acknowledged and measured

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C.L. Betz et al. / The health care transition research consortium health care transition model Table 2 Contextual: Individual domain 1. Demographic characteristics and socio-economic status a. Family structure and income b. Insurance status and type of plan c. Race (Ethnicity) d. Educational level e. Employment status/history (includes volunteering) f. Community of choice (i.e. where person resides) 2. Impairment: Disease complexity and course a. Medical care need 1. Perception of AEA-SHCN 2. Perception of provider b. Course of the condition (over time, especially in early adulthood) 1. Complications 2. Trajectory of the disease – (i.e., life expectancy limited to adolescence or early adulthood vs. later adulthood) c. Daily care burden (e.g., number of medications, time for self-care, intrusiveness of disease/condition) d. Number and type of secondary conditions (and their level of severity) 3. Developmental competencies/functional capabilities a. Cognitive level of functioning 1. Decision-making capacity b. Emotional level of functioning c. Physical level of functioning 1. Level of independence with ADLs d. Psychosocial level of functioning 1. Appropriate for chronological age 2. Communication skills 3. Peer relationships/support e. Sexual level of functioning 1. Level of competence to make informed decisions about sexual activity 2. Level of competence to protect self from sexual abuse 3. Level of competence to avoid high-risk behaviors 4. Personality processes a. Self esteem b. Body image c. Self-efficacy d. Level of motivation e. Self-determination f. Resiliency 5. Participation a. Mobility in the home and community b. Educational setting c. Vocational setting d. Social (e.g., friends, church, clubs/groups) 6. Self-Management: Disease/condition related a. Level/extent of adherence b. Health literacy c. Disease/condition knowledge 6. Self-Management Health-related a. Health behaviors (i.e. pertaining exercise, nutrition, sleep) b. Avoidance of high-risk behaviors (e.g., smoking, drinking, use of illicit drugs) c. Adheres to health promotion screening guidelines d. Independence e. Assumption of responsibility 7. Self-advocacy a. Communicates needs to providers b. Advocates for services on his/her behalf c. Organizes resources/services needed for health-related needs (e.g., transportation, interpreter) d. Is Aware of his/her own rights and protections

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Table 3 Contextual: Family/social support domain Family 1. Level of family support a. Family involvement (i.e., extent to which family has been involved over life span) b. Family composition (i.e. family unit, family structure) c. Family competency 1. Family self-advocacy skills 2. Family health literacy d. Family culture e. Health status f. Parent-child relationship 1. Shared decision-making 2. “Letting go” process (i.e., supports adolescent’s needs such as sexuality) 3. Extent to which family empowers/promote the son’s/daughter’s self-advocacy g. Family resources h. Parent-child relationship i. Future-oriented vision/expectations Social support 1. Social support network a. Characteristics of social support network b. Types of social support provided (e.g., peers, co-workers, volunteer organizations, churches, other community services providers) c. Members of social support network d. Availability and access to social support network (e.g. transportation) 2. Social environment a. Recreational interests b. Availability and access to social activities (e.g. transportation) c. Duration and frequency of social activities d. Marital/partnership/companionship status

to appropriately assess the effect of single-domain factors. Individual findings and their relationships to HCT outcomes should be described in the context of the complex HCT processes. As this model depicts, HCT is a complex dynamic phenomenon that will necessitate ongoing efforts to investigate the multidimensional relationships among variables of interest (Fig. 1). The assumptions of the model as presented below are organized according to the domains of the model (Table 1). The Individual Domain is conceptualized as encompassing the characteristics of the individual that serve as the contextual variables to the individual’s attainment of knowledge and skills necessary for a successful transition. Currently, it is not known to what degree individual characteristics (variables) support or impede AEA-SHCN’s progression through the HCT period and ultimately towards the achievement of the HCT outcomes as identified in the model. These contextual variables in the Individual Domain (Table 2) are categorized by demographic characteristics, condition stability and natural course of the disease process, development competencies, personality processes and self-management capacities. This listing of contextual variables – such as demographics [57–65], personality attributes [60,66–69] and developmental competencies [14,70–73] – is not intended to be exhaustive but

rather to demonstrate the range of variables that have been previously identified in the HCT literature. A number of variables related to the Family/Social Support Domain have been identified in the HCT literature. As AEA-SHCN initiate their HCT planning process, they may begin with a higher reliance and dependence upon family members’ support in many aspects of their lives, compared to AEA without SHCN [74]. Their dependency includes reliance on their parents for managing their health condition, such as performing complex and time-intensive treatments (e.g. catheterizations, injections, home dialysis), managing the interpersonal communication with providers (i.e. contacting the providers in instances wherein advise is sought), making logistical arrangements (e.g., making appointments with providers, ordering medications or supplies), transporting them to appointments and consenting for medical treatments. Dependency on family members will be influenced by variables in the other domains, with the Individual Domain being most prominent. To illustrate, AEA-SHCN with more extensive and severe levels of functional impairment will likely have extended periods of dependency upon family members; which may last a lifetime [59,69,75,76]. These contextual variables as depicted in Table 3 are theorized to be relevant in HCT research.

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C.L. Betz et al. / The health care transition research consortium health care transition model Table 4 Contextual: Environment domain

1.

2.

3.

Secondary and postsecondary education system a. Vocational training available in high school settings b. Enrollment in postsecondary vocational training c. Individualized education program includes: 1. Transition planning a. Appropriate expectations b. Future oriented c. Functional and outcome based 2. Health-related accommodations 3. Participation of adolescent and family members 4. Participation of interagency partners d. Referral and access to Disabled Student Services on postsecondary campus Community services and supports a. Local/state level policies/legislation 1. Eligibility determination for programs 2. Funding available for programs 3. Types of services available 4. Entitlement services available 5. Ease of accessibility/usability of services b. Level of community support 1. Available services in the community (e.g., transportation) 2. Eligibility criteria for accessing services c. Level of neighborhood support/available resources 1. Informal network of neighborhood support 2. Accessibility of neighborhood support 3. Neighborhood risk assessment d. Coordination and organization of community services Health policy and legal system a. Mandates for transition (i.e., IEP, disability coverage, insurance coverage) b. Age determination of legal status c. Patient rights (i.e., conservatorship, disability rights) d. Entitlement programs available (e.g., Title V programs for children with Special Health Care Needs; Social Security Administration [SSA], SSI)

The Environment Domain encompasses systems, services and resources of the educational system and community serving both adolescents and adults. For example, the educational system includes both secondary and postsecondary institutions. Successful HCT outcomes will be influenced by the extent to which the individual and family can access the services and resources needed to facilitate successful transition to adulthood and transfer to adult-focused health services when pediatric eligibility terminates. The identification of needed health-related accommodations that AEASHCN receive to facilitate achievement of academic learning will be dependent upon resources available in the school setting, such as the availability of the school nurse. Access to resources will also be contingent on the contextual variables identified in other domains as well such as those of the Individual Domain. Unlike other models that focus only on the health care system, the HCT model delineates the need to include the development of skills that can be applied in other service settings. The success of AEA-SHCN will depend on their ability to manage their care needs in these

other settings, exemplified by the need to obtain health related accommodations in supervised work settings. Many AEA-SHCN with complex medical or behavioral needs may require comprehensive coordination of services between agency providers (such as education, healthcare and vocational) to successfully achieve HCT outcomes. Examples of contextual variables of the Environment Domain are presented in Table 4. Perhaps the most studied aspect of HCT is the transfer of care from pediatric- to adult-focused health care providers. The transfer of health care and integration into adult-focused health care services is an essential component of the HCT model. As findings have demonstrated, difficulties accessing adult-focused care can result in increased rates of morbidity and mortality [19–21,23–25]. A number of variables in the Health Care System Domain (Table 5) have been associated with facilitating or inhibiting the transfer to or utilization of adult-focused health care. Many of these variables are represented in the components of best practices that have been identified by experts and in policy statements issued by professional associations

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Table 5 Contextual: Health care system domain 1. Pediatric system of care a. Clinic characteristics (e.g., joint clinics, young adult clinics) b. Provider technical capability related to AEA-SHCN condition (i.e., knowledge of symptoms/secondary conditions of childhood acquired conditions by adult-focused providers) i. Knowledge, skills and attitudes of providers regarding symptoms/secondary conditions of childhood acquired chronic conditions and disabilities ii. Knowledge, skills, and attitudes of providers regarding adolescents’ and emerging adults’ specific behaviors, health conditions to developmental needs, common health conditions c. d. e. f. g. h.

Availability of HCT services/program Available care coordination and referral to transition and adult services/supports Ongoing self-management instruction, reinforcement and assessment provided Support for changing parent-adolescent relationship Access to primary care providers Transfer process to adult services institutionalized

2. Adult-focused health care system characteristics a. Clinic characteristics (e.g., young adult clinics) b. Technical capability related to AEA-SHCN condition i. Knowledge, skills and attitudes of adult-focused providers regarding symptoms/secondary conditions of childhood acquired chronic conditions and disabilities ii. Knowledge, skills, and attitudes of adult providers regarding adolescents’ and emerging adults’ developmental needs, common health conditions, and preventive care c. Available care coordination and referral to adult services/supports d. Ongoing self-management instruction, reinforcement and assessment provided i. Guidelines exist for assessing knowledge ii. Benchmarks for knowledge acquisition exist 3. Access to adult health insurance plan a. Eligibility determination for public plan b. Health insurance coverage on parent plan c. Health insurance coverage through employment 4. Patient-provider relationship a. Perspective of the patient b. Perspective of the provider c. Adult health care system structures and processes (i.e., promote therapeutic relationship and are adapted to developmental skills of an AEA-SHCN) 5. Health care payment/reimbursement structures/models a. Time with provider b. Training of providers c. Medical home/health home

(e.g., the American Academy of Pediatrics (AAP), Society of Adolescent Health (SAH) [34] and National Association of Pediatric Nurse Practitioners and Associates [77]). In addition, policy statements have been issued jointly by major pediatric and adult health medical associations- AAP, American Academy of Family Practice, and American College of PhysiciansAmerican Society of Internal Medicine [48,78] and the International Societies of Nephrology and Pediatric Nephrology [79]. Of note, the variables identified in the Health Care System Domain are representative of the service provider and service system characteristics (e.g., pediatric vs. adult or primary vs. subspecialty care). The extent to which the HCT service model exemplifies the components of best practices is hypothe-

sized to be facilitators. In contrast, HCT programs that lack the elements of best practices are hypothesized to be inhibitors that will negatively affect the AEASHCN’s acquisition of the HCT tasks. However, the evidence supporting the positive impact of these best practices on important HCT outcomes is limited and further study is required to determine the effectiveness of the best practice components.

5. Research, clinical practice and policy development implications The HCTRC model provides a framework to better understand the range of contextual variables associated

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with model domains of the HCT. Other models have inherent limitations in terms of their applicability to this specialty area of research and practice. Although the Meleis, Medical Home and Chronic Care Model have been used with pediatric populations, they do not address some of the specific transition concepts and processes described in the HCTRC model. The HCTRC model provides thorough delineation of the domains and their contextual variables that comprise the HCT process. The mid-level theories, designed to address circumscribed research areas of interest as it pertains to pediatric care are insufficient for HCT investigation. The contextual variables, organized by each of the four HCT model domains (Individual, Family/Social Support, Environment and Health Care System) provide a structure for research, clinical practice and policy development purposes. Explication of the variables according to the four domains provides an elaboration of the proposed interrelationships that serve as mediators and/or moderators influencing the AEA-SHCN successful acquisition of HCT outcomes. It is essential that researchers investigate how these and other contextual variables will influence HCT outcomes, especially in research studies that are designed to test the effectiveness of HCT interventions. Better understanding of these variables and their interrelationships will inform the development of the HCT interventions that foster successful, measureable outcomes of care. For example, as identified in Tables 2 and 3, to what extent does the AEA’s conditionspecific daily care burden impact the acquisition HCT outcomes? What is the influence of family support? Do siblings influence the AEA’s acquisition of HCT outcomes? As displayed in Table 4, Are HCT interventions more effective if delivery of referral information on adult-related services is presented using technology, in person or combination of both? Is a model of HCT intervention timing and sequencing more effective than another? Health Care System variables (Table 5) to investigate the effectiveness of HCT interventions include system characteristics of clinic type (i.e. joint, adolescent), composition of interdisciplinary team, and type of care coordinator. It is of upmost importance to identify which contextual variables facilitate or inhibit HCT interventions and outcomes. Clinical application of evidence-based approaches will provide the opportunities to implement quality improvement projects that measure outcomes of HCT interventions as well as to implement projects/services that account for mediating variables. Understanding the nuances of tailoring HCT interventions to popula-

tions of AEA-SHCN will encourage the development of programs that are specific to their needs. This type of approach encourages all providers involved with HCT services to collaborate with researchers evaluating the “real time” needs of AEA-SHCN and their families. Lastly, leveraging the HCT knowledge and clinical application learned from studies conducted by HCT researchers (and informed by patients and families) and the clinical expertise of experienced HCT staff and professionals will enable the development of more definitive evidence-based treatment options. Utilizing the framework of a comprehensive theoretical model that can be applied to any diagnostic group of AEASHCN (non-categorical) will allow researchers, clinicians, and other service providers to identify and implement standard components of HCT that are successful across a variety of health conditions. For now, the evidence is lacking to promote the development and implementation of any one particular service model. We hope that the theoretical framework generated by the research activities of the HCTRC will be used by HCT researchers to fill the research gaps identified by the framework to promote evidence based systems of care delivery for AEA-SHCN. The research community, policy makers and funders need to advocate for studies that are focused on improving the quality of life of the AEA-SHCN enrolled in studies that investigate the HCT process. What is learned from these pilot studies can lead to the next steps of fostering the development of larger scale studies. All individuals involved with the public or private efforts to develop HCT services/programs can collaborate with quality improvement or research colleagues to test the effectiveness of transition outcomes. Additionally, it is essential that our colleagues disseminate what is learned in national conference venues or from the research studies that have not been published.

6. Conclusion HCT research is in the seminal stages of development. A limitation of the studies published to date has been the lack of theoretical frameworks to guide research development and integration of findings into quality improvement and service delivery models. Efforts to stimulate the development of research efforts will be facilitated with the development of the HCT model that helps to explain the variables of interest for testing and provides a framework for information sharing and research collaboration across disciplines

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and different populations. Up to now, HCT has been described as a compendium of provider-oriented activities and outcomes that include the development of an individualized and asset-oriented transition plan beginning at age 14; parental support to cope with the adolescent’s role changes; transfer processing between pediatric- and adult-focused providers; an identified transition services coordinator; self-management training and referrals to transition and adult-focused services. Evidence, whether generated by research and/or quality improvement projects, is needed to inform researchers and clinicians alike on the optimal strategies need for HCT.

[9]

[10]

[11]

[12]

Acknowledgements We thank Marie Lobo, PhD, RN, FAAN and Dr. Wendy Nehring, RN, PhD, FAAN, FAAIDD who provided invaluable assistance with the development of this model.

[13]

[14]

[15]

Conflict of interest The authors report no conflict of interest.

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