Health Care Transition Process Research Articles

Growing Up and Moving On — Transition of Care for Patients with Childhood-onset Rheumatic Disease

Transition, as defined by the Society of Adolescent Health and Medicine, is the “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented healthcare systems”1. Included in this group is the growing population of adolescents and young adults with childhood-onset rheumatic conditions, such as juvenile idiopathic arthritis (JIA) and systemic lupus erythematosus (SLE), as well as several other less common chronic inflammatory conditions. Recent longterm outcome studies have demonstrated that the majority of children with JIA continue to have active disease into adulthood, dispelling the notion that children can “outgrow” JIA2,3. Similarly, newer literature suggests that patients with childhood-onset SLE are likely to require treatment into adulthood, and are at significant risk for early morbidity and mortality in young adulthood4,5,6. These findings highlight the importance of ensuring that our patients transition successfully from pediatric to adult care, and that this transition is seamless without disruptions in treatment or planned followup. Fractured transition has the potential to lead to poor healthcare outcomes and increased healthcare system costs7,8,9. Studies examining transition in pediatric rheumatology and other chronic childhood diseases suggest that significant barriers exist with the current healthcare transition process. Using data from the National Survey of Children with Special Health Care Needs, Scal, et al reported on the proportion of adolescents with arthritis who received transition counseling. They determined that only half of young people had had a discussion with their provider about how their … Address correspondence to Dr. Hersh, Department of Pediatrics, University of Utah’s Primary Children’s Medical Center, 295 Chipeta Way, Salt Lake City, Utah 84103, USA. E-mail: aimee.hersh{at}hsc.utah.edu

Opportunities lost and found: experiences of patients with cerebral palsy and their parents transitioning from pediatric to adult healthcare.

To describe and define the experiences of adults with cerebral palsy (CP) and parents of adults with CP who have been involved in a transfer of physiatry care from pediatric to adult healthcare and to explore their experiences more generally in the transition from pediatric to adult services. A qualitative research approach was used. Semi-structured focus group interviews were conducted with adults with CP (n=5) and parents of adults with CP (n=8) to explore the health care transition (HCT) process from pediatric to adult healthcare. Four key content domains were used to facilitate the focus groups; 1) Transition Planning, 2) Accessibility of Services, 3) Experience with Adult Providers, and 4) Recommendations for Improving the Transition Process. Conventional content analysis was used to analyze the data. Four themes emerged from the focus groups; Lost in Transition, Roadmap to Care, List of None, and One Stop Shopping. Participants felt lost in the HCT process, requested a transparent transition plan, expressed concern regarding access to adult healthcare, and made recommendations for improvements. Challenges in transitioning from pediatric to adult health care were identified by all participants and several strategies were recommended for improvement.

The psychosocial impact of presenting adolescent transplant recipients with the possibility of a simplified regimen : implications for patient education during transition to self-managed care

Introduction: As they transition from parentally controlled care to self-managed care, and from paediatric care to adult care, chronically ill adolescents are facing many challenges, one of them being to find their own ways of fitting their medication intake schedule into their daily liferoutines. The complexity and frequency of medication regimens is a well-documented risk factor of non-adherence in patients with a chronic disease. We hypothesized that a possible benefit of the conversion from a twice-daily formulation of tacrolimus (Prograf®) to once daily prolonged release tacrolimus (Advagraf®) in adolescent transplant patients might be a decrease of non-intentional non-adherence due to forgetfulness. The aim of our study was to assess the subjective experience of such change, including the impact on adherence to treatment. Methods: As a prerequisite to our study, the medical safety of such switch was assessed in 32 patients. At 8-week post-switch, a sub-sample of 11 patients underwent a semi-directed interview by an independent researcher, to assess the subjective impact of the switch. Results: The results of our study illustrate that the switch improved the young patients' self-efficacy and self-determination regarding self-managed care. The relevance of our hypothesis that a simplified regimen might be associated with increased adherence in this population is confirmed. Conclusions: We discuss strategies to support self-management and enhance adherence during the healthcare transition process of adolescents toward adult-oriented care. © 2012 EDP Sciences, SETE.

Systems thinking perspectives applied to healthcare transition for youth with disabilities: a paradigm shift for practice, policy and research

Healthcare transition (HCT) for youth with disabilities is a complex phenomenon influenced by multiple interacting factors, including health, personal and environmental factors. Current research on the transition to adulthood for disabled youth has primarily focused on identifying these multilevel factors to guide the development of interventions to improve the HCT process. However, little is known about how this complex array of factors interacts and contributes to successful HCT. Systems thinking provides a theoretically informed perspective that accounts for complexity and can contribute to enhanced understanding of the interactions among HCT factors. The objective of this paper is to introduce general concepts of systems thinking as applied to HCT practice and research. Several systems thinking concepts and principles are introduced and a discussion of HCT as a complex system is provided. Systems dynamics methodology is described as one systems method for conceptualizing HCT. A preliminary systems dynamics model is presented to facilitate discourse on the application of systems thinking principles to HCT practice, policy and research. An understanding of the complex interactions and patterns of relationships in HCT can assist health policy makers and practitioners in determining key areas of intervention, the impact of these interventions on the system and the potential intended and unintended consequences of change. This paper provides initial examination of applying systems thinking to inform future research and practice on HCT.