Journal of Pediatric Rehabilitation Medicine - Volume 8, issue 1
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The Journal of Pediatric Rehabilitation Medicine (JPRM): An Interdisciplinary Approach is designed to parallel the multidisciplinary teams caring for children, adolescents and adults with childhood-onset physical disabilities and complex care needs worldwide. Published quarterly, topics include, and are not limited to, cerebral palsy, traumatic brain injury, spinal cord injury, spina bifida, limb deficiency, muscular dystrophy, stroke, cancer, developmental delays, and rare disorders. Furthermore, the journal welcomes papers dedicated to pediatric rehabilitation from a global health perspective.
The aim of JPRM is to engage a diverse group of international experts with the goal of providing readers with comprehensive information regarding children and adolescents requiring rehabilitation. JPRM brings together specialists from medicine, nursing, psychology, social work, nutrition, child life, family centered care, and occupational, physical, and speech therapy. For manuscript submissions, authorship involving at least two different specialties is encouraged, although not required, to facilitate a transdisciplinary and collaborative approach. Manuscripts are blinded and peer reviewed including biostatistical analysis. Authors are invited to submit original research, systematic and scoping reviews, guidelines, protocols, care pathways, case reports, book reviews, commentaries, editorials, and dates for future conferences.
Abstract: PURPOSE: For the growing population of adolescents and young adults with chronic childhood conditions (AYACCC), the transition from pediatric to adult health care contains many barriers and appropriate adult-based health care options are few. In 2005, the Transition Medicine Clinic (TMC), affiliated with Baylor College of Medicine, was established in Houston, Texas. It is one of the first clinics of its kind and serves AYACCC by providing a medical home in the adult health care system.…This article describes the development and implementation of the TMC, its patient population and their resource needs, and lessons learned along the way. METHODS: We retrospectively examined the electronic health records of 332 patients that established care in the TMC prior to July, 2011. Data were collected describing multiple facets of the patient population and their resource utilization, both in aggregate and for several subgroups. RESULTS: The most common primary diagnoses were cerebral palsy, spina bifida, Down syndrome, genetic conditions, and autism. Patient characteristics demonstrated the unique challenges faced by the clinic: more than 80% received Medicaid, 65% had an intellectual disability, 41% used a wheelchair, and most had multiple secondary diagnoses. Compared to typical adult primary care practices, a larger amount of clinical resources, medical technology, and specialists were used, especially for those with the most medically fragile conditions. CONCLUSIONS: The results suggest that a clinic serving AYACCC requires physicians and support staff familiar with the aforementioned issues that are willing to spend a considerable amount of time and effort outside of routine office visits in health care coordination. Because many of these patients are covered by publicly funded health insurance, enhanced reimbursement must be considered to keep clinics like the TMC self-sustaining. Future research is needed to demonstrate adult-based care delivery models, develop clinical care guidelines, and evaluate key clinical outcomes.
Keywords: Transition to adult care, chronic illnesses/conditions, adolescents, young adults, primary care, intellectual disabilities, cerebral palsy, spina bifida, down syndrome, autism
Abstract: PURPOSE: The current study utilized the Disability-Stress-Coping Model to conceptualize how disease-related risk factors (disease severity, age of diagnosis, and disease burden) and psychosocial resilience factors (coping efficacy, family cohesion, and quality of life) influence health care transition (HCT) readiness when controlling for age and disease severity . Additionally, the impact of low HCT readiness on emergency room visits and medication adherence was examined. Methods: The sample was comprised of 41 adolescents with chronic…kidney disease (CKD) who ranged in age from 13 to 18 years (Mean=15.7). Multiple regression analyses were conducted. RESULTS: None of the disease-related factors were associated with HCT readiness. Of the psychosocial factors, only family cohesion was a significant predictor and accounted for 10% unique variance. Transition readiness was significantly related to both the number of self-reported emergency room visits and medication adherence such that high readiness was related to fewer visits to the emergency room and better medication adherence; these variables accounted for 6.4% and 14.9% of the unique variance respectively. CONCLUSION: These findings suggest that disease-related risk factors may be less critical to predicting transition readiness than resilience factors such as family cohesion. Additionally, when adolescents have low transition readiness they are likely to experience significant negative health outcomes.
Abstract: PURPOSE: Transition to adulthood can be very challenging for children with special health care needs (CSHCN) especially for those with disabilities who experience functional limitations in activities at home, in school, and in the community. The study examined the transition outcomes in areas of health, education, and independent living for young adult with special health care needs (YASHCN) with disabilities. METHOD: The study is a secondary data analysis of the 2007 Survey of Adult…Transition and Health (SATH). Multivariate logistic regression analysis assessed the association between having disabilities and the transition outcomes. RESULTS: Overall, YASHCN with disabilities reported favorable health related transition outcomes with improved access to primary care, care coordination, and physician engagement in transition discussions and connection to mentors. Furthermore, YASCHN with disabilities had higher odds of receiving Medicaid or other insurance for low income or disabilities as an adult (AOR=5.26, 95% CI=3.74, 7.04). However, they were less likely to report having control over personal finances, making friends, and obtaining a high school diploma. CONCLUSION: The findings suggest that YASHCN with disabilities may be among the small proportion of CSHCNs who had a positive transition to adult health care services. However, transition outcomes related to independent living still need more improvements.
Keywords: Transition outcome, disabilities, health, independent living
Abstract: Research in the health care transition (HCT) field has increasingly expanded in the last few decades. However, structured and more intensive examination of this field is needed to provide the best health care practices for youth with chronic health conditions. This commentary includes the views of a young adult with a chronic condition who has graduated to adult-focused services, his parent, and a group of interdisciplinary health providers. We examined the current evidence in the field…and suggest prioritizing future directions for research and practice. The key factors in HCT are discussed, along with the current initiatives that are guiding policy, and propose suggestions for how to integrate the current research into practice.
Keywords: Health care transition, chronic health conditions, research, future directions
Abstract: PURPOSE: To improve youths' transition to adult healthcare, especially for youth with disabilities, The Illinois Transition Care Project created separate, yet complementary, curricula for pediatric and adult-oriented providers. METHODS: Content from the curricula was tested by practicing physicians. The project created a library of skill worksheets with functional goals for patients. All methods included opportunities to teach life skills to patients to independently manage their conditions. The curricula used Maintenance…of Certification (MOC) Part 4 credit as an incentive for physician participation. RESULTS: Pediatric pilot data indicate improvement across all sites and activities. Adult medicine results indicate increased perceived importance and feasibility of accepting young adult patients with childhood conditions. Patient/parent reviewers indicate the tools are understandable, interesting, and effective. CONCLUSIONS: Findings suggest the curricula, with MOC Part 4 credit for physicians, are effective in improving transition care. Project results provided new information on population management for transitioning youth and on the use of MOC Part 4 credit as an incentive. Findings have implications for primary care and specialty physicians, team-based care, teaching self-management skills to patients and methods for engaging adult-oriented physicians in the transition process.
Keywords: Healthcare transition, complex childhood conditions, condition self-management, functional goals, care coordination, quality improvement, adolescent care, childhood onset, childhood acquired
Abstract: Enrollment of young adults is foundational to the success of the Affordable Care Act (ACA). This article analyzes the implications for young adults transitioning from pediatric to adult care with the implementation of the ACA. We review the key characteristics of this population relevant to health care utilization and access as well as the impact of private insurance market reforms, health insurance marketplaces, Medicaid expansion, and workforce development provisions on this population. We then analyze how…reform is impacting and will continue to impact specific populations of young adults, including individuals with disabilities, college students, immigrants, young adults who age out of the foster care system and individuals involved with the criminal justice system. Finally, we look at the socio-economic and political factors influencing outreach efforts, and make recommendations to maximize the benefits of the law for young adults to empower them to have access to care and financial security.
Keywords: ACA, health policy, young adults, children with special healthcare needs, health care reform, Medicaid expansion, insurance, uninsured, pediatric systems, college students, immigrants, foster care, long-term care, criminal justice system, health disparities