From pediatric to adult care: strategic evaluation of a transition program for patients with osteogenesis imperfecta

BMC Health Services Research

Christophe Bedos²  Francis H Glorieux³  Joanne Ruck³  Trudy Wong³  Frank Rauch³  Maman Joyce Dogba¹ 

[1] Department of Family and Emergency Medicine, Laval University, 1050 Medicine Avenue, Quebec G1V 0A6, Canada;Department of Social and Preventive Medicine, Faculty of Medicine, Université de Montréal, C.P. 6128, Succ. Centre-Ville, Montreal QC H3C 3 J7, Canada;Shriners Hospital for Children, 1529 Cedar Avenue, Montreal, Quebec H3G 1A6, QC, Canada

关键词: Child and adolescent health;    Healthcare system;    Program evaluation;    Osteogenesis imperfecta;    Transition program;   

Others  :  1098170
DOI  :  10.1186/s12913-014-0489-1

 received in 2013-12-19, accepted in 2014-10-06,  发布年份 2014

【 摘 要 】

Background

Achieving a successful transition from pediatric to adult care for young adults with special needs, especially rare genetic diseases such as osteogenesis imperfecta (OI), is a prominent issue in healthcare research. This transition represents a challenge for patients with OI, their families, clinicians and healthcare managers because of the complex nature of the process and the lack of evaluation of existing transition programs. We evaluated a transition program for adolescents and young adults with OI from a pediatric orthopedic hospital to adult care.

Methods

Data were collected by interview, observation, and document review from April 2013 to October 2013. Participants included six patients with OI, four parents, and 15 staff, including administrators, coordinators, social workers, nurses, pediatricians, surgeons, occupational therapists and physiotherapists. A SWOT (Strengths, Weaknesses, Opportunities and Threats) analysis was performed.

Results

The strengths of the transition program included a solid theoretical approach based on a partnership with parents, and a comprehensive transition model based on fostering independent living and professional integration. The program’s main weaknesses were the successive organizational changes and discontinuation of certain transition activities, and the potential conflict between the transition program and participation in research protocols. Further opportunities include the implementation of a multi-site transition model with cross-site personnel and user evaluations, with the inclusion of second-generation patients. Dissatisfaction reported by some care-team members at the adult care hospital could threaten collaboration among institutions involved in the transition process, whereas dissatisfaction of some former patients may reduce their perceptions of quality of care received during the transition.

Conclusions

This study confirmed that a “one-size-fits-all” transition model for patients with OI would be inappropriate across, or even within institutions. Opportunities should be seized to create tailored, theoretically-sound transition programs that reflect patient preferences, especially those of young adults with complex and chronic health conditions. Alignment with other organizational activities should be considered, and ongoing evaluation of transition programming may be required. This SWOT analysis and utilization-focused evaluation has led to a comprehensive new project to improve the transition program for patients with OI and other conditions requiring special follow-up.

【 授权许可】

   
2014 Dogba et al.; licensee BioMed Central Ltd.

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