Search

This booklet defines chronic health-related illnesses and how they affect life functions; discusses the importance of transition planning; identifies how parents, school personnel, medical personnel, and community service providers can help the students with a chronic illness gain the knowledge and skills necessary for a successful postsecondary outcome; and lists elements of effective transition planning. The goals of a transition plan are defined and include the student's ability to: identify the impact of the illness on his or her life; determine what the impact of the illness may be in the particular postsecondary setting; and develop and implement strategies to minimize or alleviate this impact in order to increase the opportunity for success. The role of disability support services staff in helping prospective students identify how illness may impact the experience at that particular higher education institution and decide on appropriate accommodations is also discussed. Finally, factors that students should assess when choosing an institution are described and include assessing: the college's ability to meet academic needs, community services at the college's location, the college's ability to meet disability-related needs, health insurance coverage, and financial needs for education. Contains a list of organizational resources and a list of two publications that focus on postsecondary institutions and disability laws. (CR)

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.

Sara Sabbagh,1,2 Tova Ronis,1,3 Patience H White3–5 1Department of Rheumatology, Children’s National Health System, Washington DC, USA; 2National Institute of Arthritis and Musculoskeletal and Skin Diseases, National Institutes of Health, Bethesda, MD USA; 3Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington DC, USA; 4Department of Rheumatology, George Washington University School of Medicine and Health Sciences, Washington DC, USA; 5Department of Medicine, George Washington University School of Medicine and Health Sciences, Washington DC, USA Abstract: 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. Keywords: health care transition, pediatric rheumatology, special health care needs, transition, transition readiness assessment