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Nationally, there are low rates of high school-age youth receiving health care transition (HCT) preparation from health care providers. This pilot study implemented and assessed the use of a structured HCT process, the Six Core Elements of HCT, in two school-based health centers (SBHCs) in Washington, DC. The pilot study examined the feasibility of incorporating the Six Core Elements into routine care and identified self-care skill gaps among students. Quality improvement methods were used to customize, implement, and measure the Six Core Elements and HCT supports. After the pilot, both SBHCs demonstrated improvement in their implementation of the structured HCT process. More than half of the pilot participants reported not knowing how to find their doctor's phone number and not knowing what a referral is. These findings indicate the need for incorporating HCT supports into SBHCs to help students build self-care skills necessary for adulthood.

Youth with special health care needs/disabilities want what all youth in America want: independence, health, friends, and jobs. Yet, between 19 and 23 years of age (depending on the state), youth with special health care needs/disabilities often find little availability of health insurance or health providers that were an essential part of why they survived and now are looking to participate in adult society. This article reviews the complex system of health insurance options that young adults with special health care needs/disabilities face as they move from pediatric to adult health insurance systems. Yet because of a maze of different eligibility criteria, many of these options are not available to young adults with special health care needs, and they are left with out health insurance. Similarly, the issues surrounding health provider reimbursement often leave the young adult with special health care needs without health care professionals who can manage their complex health conditions as they transition into adulthood. In conclusion, this article outlines what steps could be taken by associations and the health policy, advocacy, and governmental communities to improve the situation. Pediatrics 2002;110:1328-1335; access, health insurance, Medicaid, Medicare, transition., ABBREVIATIONS. NCHS, National Center for Health Statistics; SCHIP, State Children's Health Insurance Program; SSI, Supplemental Security Income; HIV, human immunodeficiency virus; CMS, Center for Medicare and Medicaid Services; OASDI, Old [...]

Tertiary care facilities, as found in large medical institutions, are largely inaccessible to poor and uninsured children suffering from rheumatological and musculoskeletal disorders. Diseases in these categories represent more than half of the chronic, disabling illnesses in the 19- to 24-year-old age group. Most children with these diseases are uninsured; those with some coverage are usually underinsured. Physical and occupational therapy, orthotic devices, and other remedial and therapeutic services are not readily available to the majority of poor patients. Those who receive benefits as children may lose them when they reach adulthood, when insurance coverage may be denied because of the ''pre-existing'' clinical condition. Poor children with rheumatoid arthritis and minimal education will be unable to successfully function and thrive as adults. Children with juvenile rheumatoid arthritis (an inflammatory disease of the joints) require special care, lest their medication create other clinical problems. Young patients with systemic lupus erythematosus (an inflammatory disease of connective tissue) may require routine hospital care, chemotherapy, and out-patient follow-up. Dermatomyositis (an inflammatory disease of skin and muscles) requires intensive therapy and medication. Since these diseases are usually chronic and progressive, they follow children into adulthood. Specialized transitional services are usually required. The range of these diseases demands intense supportive care from many allied health care fields. The scope of this care is expensive and currently outside the reach of poor, but needy children. Remedies to relieve the burdens children who are both poor and handicapped should not be overlooked. Publicly-supported, special interest charities serve their function well, but they can not provide all the nongovernment support that is needed. The broad medical community, working together, can encourage changes in the present health care system that will make services available when and where they are required. Physicians and researchers must also continue the scientific effort needed to eliminate or further diminish the tragic effects of these diseases. (Consumer Summary produced by Reliance Medical Information, Inc.)

This study examines the relationships between receipt of health care transition (HCT) preparation among U.S. youth and five other components of a well-functioning system of services (family partnership in decision-making, medical home, early/continuous screening for special health care needs [SHCN], continuous/adequate health insurance, access to community-based services). Data came from the combined 2016-2017 National Survey of Children's Health (n = 29,617 youth ages 12-17). Parents/caregivers answered questions about their child's health care experiences, which were combined to measure receipt of HCT preparation and the other five components of a well-functioning system of services. Unadjusted and adjusted analyses were conducted to examine associations, stratified by youth with and without special health care needs (YSHCN/non-YSHCN). About 16.7% of YSCHN and 13.9% of non-YSHCN received HCT preparation (p =.0040). Additionally, 25.3% of YSHCN and 27.3% of non-YSHCN received all five remaining components of a system of services (p =.1212). HCT preparation was positively associated with receipt of the combined five components among both YSHCN (adjusted prevalence rate ratio = 1.53, 95% confidence interval: 1.20-1.86) and non-YSHCN (adjusted prevalence rate ratio = 1.63, 95% confidence interval: 1.39-1.88). Regarding individual system of services components, early and continuous screening for SHCN was significantly associated with HCT preparation for both populations. For non-YSHCN only, having a medical home was associated with HCT preparation. The remaining three components were not associated with HCT preparation for either population after adjusting for sociodemographic characteristics. Among both YSHCN and non-YSHCN, HCT preparation is positively associated with receipt of early and continuous screening for SHCN as well as the five combined components of a well-functioning system of services. [ABSTRACT FROM AUTHOR]

Abstract Background Children with complex medical issues experience barriers to the transition of care from pediatric to adult providers. We sought to identify these barriers by elucidating the experiences of patients with idiopathic inflammatory muscle disorders. Methods We collected anonymous survey data using an online website. Patients and their families were solicited from the US and Canada through established clinics for children with idiopathic inflammatory muscle diseases as well as with the aid of a nonprofit organization for the benefit of such individuals. The parents of 45 older children/young adults suffering from idiopathic inflammatory muscle diseases were surveyed. As a basis of comparison, we similarly collected data from the parents of 207 younger children with inflammatory muscle diseases. The survey assessed transition of care issues confronting families of children and young adults with chronic juvenile myositis. Results Regardless of age of the patient, respondents were unlikely to have a designated health care provider assigned to aid in transition of care and were unlikely to be aware of a posted policy concerning transition of care at their pediatrician's office. Additionally, regardless of age, patients and their families were unlikely to have a written plan for moving to adult care. Conclusions We identified deficiencies in the health care experiences of families as pertain to knowledge, self-advocacy, policy, and vocational readiness. Moreover, as children with complex medical issues grow up, parents attribute less self-advocacy to their children's level of independence.

Risk and vulnerability encompass many dimensions of the transition from adolescence to adulthood. Transition from pediatric, parent-supervised health care to more independent, patient-centered adult health care is no exception. The tenets and algorithm of the original 2011 clinical report, "Supporting the Health Care Transition from Adolescence to Adulthood in the Medical Home," are unchanged. This updated clinical report provides more practice-based quality improvement guidance on key elements of transition planning, transfer, and integration into adult care for all youth and young adults. It also includes new and updated sections on definition and guiding principles, the status of health care transition preparation among youth, barriers, outcome evidence, recommended health care transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. The clinical report also includes new recommendations pertaining to infrastructure, education and training, payment, and research. [ABSTRACT FROM AUTHOR]

The transition from pediatric to adult health care is often a challenging process due to multiple interwoven complexities, especially for children with chronic medical conditions. Health care transition (HCT) is a process of moving from a pediatric to an adult model of health care with or without a transfer to a new clinician. This paper focuses on what is known about HCT for youth and young adults (Y/YA) with rheumatic diseases within a larger context of HCT recommendations. HCT barriers for youth, families, and providers and current evidence for a structured HCT processes are reviewed. Practical advice is offered on how to approach transition for Y/YA, what tools are available to assist in a successful transition process, and what are the areas of future research that are needed to improve the HCT evidence base. [ABSTRACT FROM AUTHOR]

The article discusses the study on transition to adult health care for young people with rheumatic conditions in the U.S. Transitions in medical care is reportedly deemed as a high-risk period wherein medical conditions can worsen and continuity of care can be lost. The results revealed that the transition process can be improved with interventions in rheumatology practice. Also explored are the core elements of health care transition.

The Environmental and Policy Strategies to Increase Physical Activity Among Adults with Arthritis report focuses on the ways to make physical activity more convenient and accessible for adults with arthritis. The report is designed to engage 6 important sectors, which were adapted from the National Physical Activity Plan, as partners with a mutual interest in increasing physical activity among adults with arthritis using environmental and policy strategies. It serves as a call to action for each of these sectors to collaborate and focus more attention on helping people live well with arthritis and be a productive part of our society. [ABSTRACT FROM AUTHOR]

The article discusses the national initiatives, addressing Osteoarthritis (OA), developed by various organizations including Arthritis Foundation (AF) and its partners such as Centers for Disease Control and Prevention (CDC) and American College of Rheumatology (ACR). Few initiatives include U.S. Bone And Joint Initiative, the OA agenda and OA screening questionnaire. Also discussed is the National Arthritis Action Plan (NAAP) emphasizing on four public health approaches.

OVERVIEW:: National, state, and local policymakers and society at large are paying growing attention to osteoarthritis. This movement is fueled by organizations and coalitions that are championing important initiatives. This article spotlights several initiatives sponsored by the Arthritis Foundation and other organizations. [ABSTRACT FROM AUTHOR]

Background: Children with complex medical issues experience barriers to the transition of care from pediatric to adult providers. We sought to identify these barriers by elucidating the experiences of patients with idiopathic inflammatory muscle disorders. Methods: We collected anonymous survey data using an online website. Patients and their families were solicited from the US and Canada through established clinics for children with idiopathic inflammatory muscle diseases as well as with the aid of a nonprofit organization for the benefit of such individuals. The parents of 45 older children/young adults suffering from idiopathic inflammatory muscle diseases were surveyed. As a basis of comparison, we similarly collected data from the parents of 207 younger children with inflammatory muscle diseases. The survey assessed transition of care issues confronting families of children and young adults with chronic juvenile myositis. Results: Regardless of age of the patient, respondents were unlikely to have a designated health care provider assigned to aid in transition of care and were unlikely to be aware of a posted policy concerning transition of care at their pediatrician's office. Additionally, regardless of age, patients and their families were unlikely to have a written plan for moving to adult care. Conclusions: We identified deficiencies in the health care experiences of families as pertain to knowledge, self-advocacy, policy, and vocational readiness. Moreover, as children with complex medical issues grow up, parents attribute less self-advocacy to their children's level of independence. [ABSTRACT FROM AUTHOR]

The purpose of this article is to review the psychiatric conditions associated with systemic lupus erythematosus (SLE) in children and adolescents. Emphasis is placed on clinical presentation and the differential diagnosis between organic psychiatric disorder, toxic psychiatric disorder, and functional psychological symptoms. [ABSTRACT FROM AUTHOR]

Consumer advisory coalitons recognize the effectiveness of parents as advocates in obtaining services for their children with speial health cate needs As a result, advocacy training programs for parents of children with developmental disabilities have become popular Parents of children with chronic health conditions who are not traditionally served through special education, find that they have concerns and needs not addressed by these advocacy training programs This paper describes a unique prograto that targets these parents A distinctive feature of this program is its focus on helping parents develop competency in utilizing communications skills to deal effectively with education and medical systems. [ABSTRACT FROM AUTHOR]