Evaluating the transition of young adults with osteogenesis imperfecta: a patient-focused prospective study
Lucy Collins, Angelina Lim, Sara Alwaheb, Natalie S.S. Chee, Chee K. Chew, Giovanni G.R. Farag, Katrina Gurdev, Margaret Zacharin, Peter SimmAbstract
Objectives
Successful transition from paediatric to adult healthcare is integral in the management of chronic conditions. Osteogenesis imperfecta (OI) is a rare genetic connective tissue disorder affecting the skeleton and several other organ systems, with lifelong implications for clinical management. Consensus guidelines for the transition of patients with OI do not currently exist. We aimed to evaluate our institution’s transition program for patients with OI and identify strengths and weaknesses of the current process.
Methods
Participants were recruited from April to August 2023 for this cross-sectional survey study. Data were collected using a researcher administered questionnaire. Questionnaire responses, coded into positive, negative, and neutral categories, were explored using content analysis.
Results
66 participants were included: 64 patients with OI and 2 staff members involved in transition care. Of the 64 patients, 35 were aged 16 years and older and able to provide responses specifically evaluating the transition period. Of these 35, 26 (74 %) had been transferred to adult care, with 6 (23 %) reporting no ongoing care. Predominantly, challenges and weaknesses of the transition program were identified; lack of knowledge, feeling-ill prepared and being lost during the transition process.
Conclusions
Early introduction of transition care, a comprehensive transfer tool, future options for adult care and a transition coordinator/clinic were suggested by participants. Future work involves a prospective study implementing these recommendations.