Osteogenesis imperfecta: effecting the transition from adolescent to adult medical care.

Mark McIntosh,'s picture
PubMed URL: 
Germain-Lee EL
Author List: 
Shapiro JR
Germain-Lee EL
J Musculoskelet Neuronal Interact
PubMed ID: 
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.
Published Date: 
March, 2012

March is Brain Injury Awareness Month

Brain Injury Awareness Month

Help raise awareness and support for brain injury research, treatment and education. Learn more about our program.

Appointments & Referrals



Read inspiring stories, news and updates about the Institute's patient care, research, special education, professional training, and community programs.


Resource Finder


A free resource that provides access to information and support for individuals and families living with developmental disabilities.