Effective transition of adolescents from pediatric to adult health services has become a prominent issue in health care research. As a result of unprecedented advances in medical practice over the past three decades, as many as 50 - 90% of children with congenital or acquired physical disabilities now reach adolescence and live into adulthood
]. For example, in 1995, twice as many newborns with spina bifida survived in the US as compared to 1975
]. Consequently, a new cohort of adults with childhood-onset disabilities and complex chronic conditions has emerged, requiring appropriate transitional care upon their “discharge” from pediatric facilities.
Transition from the pediatric to adult health care system is a complex process that must be addressed in a holistic manner inclusive of medical, psychosocial, educational, and vocational components
]. Ideally, health care during the period of transition should be delivered in a coordinated and uninterrupted manner through the provision of developmentally appropriate and comprehensive services
]. However, finding appropriate adult care is challenging
], as many adult programs have eligibility criteria that focus on adults with new onset disability issues
], and there is a general lack of expertise among most adult health care providers related to aging with a childhood-onset disability
]. In the absence of an adequate system of care, adolescents with disabilities are often significantly under-serviced as young adults, and many receive no care whatsoever
Even when links to adult care are established, the process of transition remains difficult. First, there are important differences between the pediatric and adult health care environments, such as decreased family involvement and highly specialized, fragmented care that characterize the adult health care system
]. To succeed in this system, young people need to learn how to manage their own health
]. Unfortunately, the pediatric system has not emphasized developing the skills of children with disabilities to enable them to navigate the adult system that requires more self-advocacy and self-determination skills than the pediatric sector, where parents often play this role
]. Second, adolescence is a critical developmental phase between childhood and adulthood, characterized by increased socio-cultural turbulence and vulnerability for all adolescents, regardless of disability
]. Two of its hallmarks are a search for an identity separate from that of the family of origin and re-defining relationships with adults in parental and caring roles
]. These may contribute to tension in the relationships of adolescents with their families and health care providers.
This difficulty in establishing continuity of care from the pediatric to adult system and inadequate transition preparation often results in unfavourable outcomes for young adults with disabilities. Gaps in transition to the adult health system result in poor health outcomes and diminished opportunities to participate as productive members of the community
]. Lack of continuity is especially detrimental to populations with demanding and complex health care needs. For example, Young et al.
] reported a significant drop in self-reported health status from youth to adulthood in young people with acquired brain injury (ABI), cerebral palsy (CP), and spina bifida (SB). In the absence of community and primary care services, health issues go unmonitored, putting these individuals at further risk for developing preventable secondary complications
]. This paradoxically has led to increased utilization of health services (e.g., inpatient hospitalizations) and inappropriate reliance on emergency health services (e.g., use of walk-in clinics and emergency departments)
Despite much pressure to identify best practices in transition, research has only recently started to move from consensus reports to formal evaluations. The research to-date has focused largely on the need for transitional care
] and articulating challenges to implementing effective models of care
]. Empirical evidence addressing processes and outcomes of transition remains limited
]. The majority of recent papers on transition focus on generating recommendations for supporting transitions, while few qualitative studies and one prospective evaluation provided empirical data
]. To our knowledge, only seven studies described in the transition literature on physical disability (SB
]) and chronic illness (type 1 diabetes, cystic fibrosis, juvenile arthritis, epilepsy
]) were formal evaluations of transition care that included prospective data collection. Of these, no studies were longitudinal or followed the participants significantly past the transitional period, and three studies were qualitative and thus lacked a comparison group and dealt with patient perceptions rather than provided measures of transition outcomes
]. Only four studies
] examined health status, health care utilization, quality of life or drop-out rates using objective measures. It is difficult to draw conclusions from these studies because of the variability in the sample sizes, diagnoses, measures, types of comparison groups, and international differences in models of health care provision affecting access to services (e.g., health care insurance differences in the US and Canada). In addition, participants in the majority of these studies had a chronic illness as their primary diagnosis
], rather than a physical disability. Although these chronic conditions can be quite physically disabling, transition preparation for these youth may differ from that for youth with disabilities in having a much more specific self-management focus. Thus, research in transition care for these clients is rooted in adult literature that does not take into account the shift of responsibility from parent to youth
]. Finally, the optimal window for measuring continuity of care is not yet known, and cross-sectional studies might not have reflected the outcomes of youth who ‘fall through the cracks in the system’ several years after discharge from the pediatric system. In summary, the current status of childhood disability transition literature is characterized by methodological limitations, lack of definitive results or focus on physical childhood-onset disability, and absence of mixed-method longitudinal studies that would capture both objective measures of functional status and patient/clinician experiences
The “LETS Study”
The “Longitudinal Evaluation of Transition Services” (“LETS Study”) study will attempt to address the many gaps identified in the literature by conducting a formal, prospective, longitudinal, mixed-method evaluation of the LIFEspan (“Living Independently and Fully Engaged”) model of transition care
]. LIFEspan is a recently funded, coordinated, client-centred model of linked health care across the lifespan, offered through a partnership between a pediatric rehabilitation centre and an adult rehabilitation centre. The study will compare adolescents with the diagnoses of CP and those with ABI, who receive LIFEspan, to a group of adolescents with SB who will not receive LIFEspan. A second cohort of young adults with CP and ABI who had been discharged prior to the formal launch of LIFEspan, will also be used as a comparison group. The findings of this work will inform the understanding of delivery of transitional care services for young people with childhood-onset disabilities. The objective of this paper is to serve as the first step in knowledge dissemination related to the LETS study. The current paper outlines the study protocol, explains the rationale for the study design and selection of outcome measures, and documents several methodological challenges encountered.
The primary quantitative outcome of the study will be participants’ post-transition continuity of care, as defined in the “Measures” section of the protocol. We hypothesize that continuity within the health care system after transitioning from pediatric to adult care will be maintained by those participants who receive LIFEspan. Secondary outcomes of interest will include health and well-being, activities and social participation, transition readiness, and health care utilization (frequency, type and duration of emergency services and hospitalizations). It is further hypothesized that youth who will have experienced continuity of care will have enhanced access to health care professionals, reduced emergency health care use, better health status and well-being, more involvement in the community, and greater self-determination, self-efficacy, and self-management skills, as compared with youth not having received LIFEspan. In-depth qualitative analyses of interviews conducted with parents and youth will further inform our understanding of the transition experience. In addition, a detailed chart audit will provide a comprehensive description of the services received by participants, in order to ascertain the model’s treatment fidelity.