A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams.
Acta Orthop
; 92(5): 608-614, 2021 Oct.
Article
in En
| MEDLINE
| ID: mdl-34180749
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 conferences, 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.
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Osteogenesis Imperfecta
/
Patient Care Team
/
Plastic Surgery Procedures
/
Clinical Decision-Making
Type of study:
Guideline
/
Prognostic_studies
/
Qualitative_research
Aspects:
Patient_preference
Limits:
Humans
Language:
En
Journal:
Acta Orthop
Journal subject:
ORTOPEDIA
Year:
2021
Document type:
Article
Affiliation country:
Netherlands