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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.

Background Health care transition (HCT) is a period of high vulnerability for patients with chronic childhood diseases, particularly when patients shift from a pediatric to an adult care setting. An increasing number of patients with Kawasaki disease (KD) who develop medium and large coronary artery aneurysms (classified by the American Heart Association according to maximal internal coronary artery diameter Z-scores ≥5 and ≥10, respectively) are becoming adults and thus undergoing an HCT. However, a poor transition to an adult provider represents a risk of loss to follow-up, which can result in increasing morbidity and mortality. Methods and Results This scientific statement provides a summary of available literature and expert opinion pertaining to KD and HCT of children as they reach adulthood. The statement reviews the existing life-long risks for patients with KD, explains current guidelines for long-term care of patients with KD, and offers guidance on assessment and preparation of patients with KD for HCT. The key element to a successful HCT, enabling successful transition outcomes, is having a structured intervention that incorporates the components of planning, transfer, and integration into adult care. This structured intervention can be accomplished by using the Six Core Elements approach that is recommended by the American Academy of Pediatrics, the American Academy of Family Physicians, and the American College of Physicians. Conclusions Formal HCT programs for patients with KD who develop aneurysms should be established to ensure a smooth transition with uninterrupted medical care as these youths become adults.

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.)

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]