A roadmap to surgery in osteogenesis imperfecta: results of an inter- national collaboration of patient organizations and interdisciplinary care teams

Authors

  • Ralph J Sakkers University Medical Center Utrecht, Utrecht, The Netherlands
  • Kathleen Montpetit Shriners Hospitals for Children®-Canada, Montreal, Canada
  • Argerie Tsimicalis Shriners Hospitals for Children®-Canada, Montreal, Canada; Ingram School of Nursing, Faculty of Nursing and Health Sciences, McGill University, Montreal, Canada
  • Thomas Wirth Olga Hospital, Klinikum Stuttgart, Stuttgart, Germany
  • Marjolein Verhoef University Medical Center Utrecht, Utrecht, The Netherlands
  • Reginald Hamdy Shriners Hospitals for Children®-Canada, Montreal, Canada
  • Jean A Ouellet Shriners Hospitals for Children®-Canada, Montreal, Canada
  • Rene M Castelein University Medical Center Utrecht, Utrecht, The Netherlands
  • Chantal Damas Shriners Hospitals for Children®-Canada, Montreal, Canada
  • Guus J Janus Isala Clinics, Zwolle, The Netherlands
  • Wouter H Nijhuis University Medical Center Utrecht, Utrecht, The Netherlands
  • Leonardo Panzeri Osteogenesis Imperfecta Federation Europe, Eindhoven, The Netherlands
  • Simona Paveri Osteogenesis Imperfecta Federation Europe, Eindhoven, The Netherlands
  • Dagmar Mekking Care4BrittleBones Foundation, Wassenaar, The Netherlands
  • Kelly Thorstad Shriners Hospitals for Children®-Canada, Montreal, Canada
  • Richard W Kruse Nemours/A.I. duPont Hospital for Children, Wilmington, DE, USA

DOI:

https://doi.org/10.1080/17453674.2021.1941628

Abstract

Background and purpose — Involvement of patient organizations is steadily increasing in guidelines for treatment of various diseases and conditions for better care from the patient’s viewpoint and better comparability of outcomes. For this reason, the Osteogenesis Imperfecta Federation Europe and the Care4BrittleBones Foundation convened an interdisciplinary task force of 3 members from patient organizations and 12 healthcare professionals from recognized centers for interdisciplinary care for children and adults with osteogenesis imperfecta (OI) to develop guidelines for a basic roadmap to surgery in OI.

Methods — All information from 9 telephone confer- ences, expert consultations, and face-to-face meetings during the International Conference for Quality of Life for Osteogenesis Imperfecta 2019 was used by the task force to define themes and associated recommendations.

Results — Consensus on recommendations was reached within 4 themes: the interdisciplinary approach, the surgical decision-making conversation, surgical technique guidelines for OI, and the feedback loop after surgery.

Interpretation — The basic guidelines of this roadmap for the interdisciplinary approach to surgical care in children and adults with OI is expected to improve standardization of clinical practice and comparability of outcomes across treatment centers.

Downloads

Download data is not yet available.

Downloads

Published

2021-06-28

How to Cite

Sakkers, R. J., Montpetit, K., Tsimicalis, A., Wirth, T., Verhoef, M., Hamdy, R., … Kruse, . R. W. (2021). A roadmap to surgery in osteogenesis imperfecta: results of an inter- national collaboration of patient organizations and interdisciplinary care teams. Acta Orthopaedica, 92(5), 608–614. https://doi.org/10.1080/17453674.2021.1941628