Related Experiment Video

Updated: Jun 24, 2026

Creating Rigidly Stabilized Fractures for Assessing Intramembranous Ossification, Distraction Osteogenesis, or Healing of Critical Sized Defects
07:35

Creating Rigidly Stabilized Fractures for Assessing Intramembranous Ossification, Distraction Osteogenesis, or Healing of Critical Sized Defects

Published on: April 11, 2012

Evaluating the transition of young adults with osteogenesis imperfecta: a patient-focused prospective study

Lucy Collins1,2,3, Angelina Lim2,4, Sara Alwaheb4

  • 1Department of Endocrinology, Royal Children's Hospital, Parkville, VIC, Australia.

Journal of Pediatric Endocrinology & Metabolism : JPEM
|June 23, 2026
PubMed

Insights

Patients with Osteogenesis Imperfecta (OI) reported significant challenges during their transition from pediatric to adult care, highlighting a need for improved transition programs and support. Key issues included lack of knowledge and feeling unprepared.

Area of Science:

  • Medical transition of care
  • Rare genetic disorders
  • Chronic condition management

Background:

  • Successful transition from pediatric to adult healthcare is crucial for chronic condition management.
  • Osteogenesis Imperfecta (OI) is a rare genetic disorder with lifelong implications.
  • Current consensus guidelines for OI transition care are lacking.

Purpose of the Study:

  • Evaluate an institution's transition program for patients with Osteogenesis Imperfecta (OI).
  • Identify strengths and weaknesses of the current OI transition process.
  • Gather patient and staff perspectives on transition care.

Main Methods:

  • Cross-sectional survey study conducted from April to August 2023.
  • Researcher-administered questionnaire to collect data.
  • Content analysis used to explore coded questionnaire responses.

Main Results:

  • 66 participants included: 64 patients with OI and 2 staff members.
  • 35 patients aged 16+ provided transition-specific feedback.
  • 74% of eligible patients transferred to adult care; 23% reported no ongoing care.
  • Identified weaknesses: lack of knowledge, feeling unprepared, and feeling lost during transition.

Conclusions:

  • Participants suggested early introduction of transition care.
  • A comprehensive transfer tool and dedicated transition coordinator/clinic were recommended.
  • Future work will involve a prospective study to implement these recommendations.
Abstract

Keywords:
child and adolescent healthosteogenesis imperfectaprogram evaluationtransition care

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