title: Osteogenesis imperfecta: effecting the transition from adolescent to adult medical care.
abstract: The objective of this paper is to provide guidelines for pediatricians, adult physicians in different medical disciplines and patients' families who are planning the transition to adult care for the adolescent with osteogenesis imperfecta (OI). This observational report reflects concerns expressed by patients, their families, and involved physicians regarding the problems encountered with the transition of care. Methods for dealing with transitional issues are presented. OI is a heritable disorder of connective tissue in which fractures are the dominant clinical feature. However, OI is a systemic disorder with broad clinical variability in which there are unpredictable episodes of trauma. Coordinated team support provides the best level of care for the child with OI. This paper discusses 4 key topics related to effecting the transition from pediatric to adult care: 1) Transitioning and maintaining health, 2) Preserving or improving the level of function, 3) Assuring continuity of medical/surgical care, and 4) Re-structuring psychosocial and work-related systems. The process of transition requires active communication between the pediatric and adult team members along with a proactive approach by the patient and family. In addition, as the transition is established, the patient with OI should be encouraged to be his/her own advocate and care coordinator.
authors.affiliation: Bone and Osteogenesis Imperfecta Department, Kennedy Krieger Institute, Johns Hopkins School of Medicine, 707 North Broadway, Baltimore, MD 21205, United States. shapiroj@kennedykrieger.org
authors.forename: J R
authors.initials: JR
authors.lastname: Shapiro
authors.forename: E L
authors.initials: EL
authors.lastname: Germain-Lee
mesh_terms: D000293:Adolescent; D000328:Adult; D006801:Humans; D010013:Osteogenesis Imperfecta; D017410:Practice Guidelines as Topic; D060305:Transition to Adult Care