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A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams
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 th...
Autores principales: | , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
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Taylor & Francis
2021
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Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8519518/ https://www.ncbi.nlm.nih.gov/pubmed/34180749 http://dx.doi.org/10.1080/17453674.2021.1941628 |
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author | Sakkers, Ralph J Montpetit, Kathleen Tsimicalis, Argerie Wirth, Thomas Verhoef, Marjolein Hamdy, Reginald Ouellet, Jean A Castelein, Rene M Damas, Chantal Janus, Guus J Nijhuis, Wouter H Panzeri, Leonardo Paveri, Simona Mekking, Dagmar Thorstad, Kelly Kruse, Richard W |
author_facet | Sakkers, Ralph J Montpetit, Kathleen Tsimicalis, Argerie Wirth, Thomas Verhoef, Marjolein Hamdy, Reginald Ouellet, Jean A Castelein, Rene M Damas, Chantal Janus, Guus J Nijhuis, Wouter H Panzeri, Leonardo Paveri, Simona Mekking, Dagmar Thorstad, Kelly Kruse, Richard W |
author_sort | Sakkers, Ralph J |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-8519518 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | Taylor & Francis |
record_format | MEDLINE/PubMed |
spelling | pubmed-85195182021-10-16 A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams Sakkers, Ralph J Montpetit, Kathleen Tsimicalis, Argerie Wirth, Thomas Verhoef, Marjolein Hamdy, Reginald Ouellet, Jean A Castelein, Rene M Damas, Chantal Janus, Guus J Nijhuis, Wouter H Panzeri, Leonardo Paveri, Simona Mekking, Dagmar Thorstad, Kelly Kruse, Richard W Acta Orthop Research Article 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. Taylor & Francis 2021-06-28 /pmc/articles/PMC8519518/ /pubmed/34180749 http://dx.doi.org/10.1080/17453674.2021.1941628 Text en © 2021 The Author(s). Published by Taylor & Francis on behalf of the Nordic Orthopedic Federation. https://creativecommons.org/licenses/by/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) ), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Research Article Sakkers, Ralph J Montpetit, Kathleen Tsimicalis, Argerie Wirth, Thomas Verhoef, Marjolein Hamdy, Reginald Ouellet, Jean A Castelein, Rene M Damas, Chantal Janus, Guus J Nijhuis, Wouter H Panzeri, Leonardo Paveri, Simona Mekking, Dagmar Thorstad, Kelly Kruse, Richard W A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title | A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title_full | A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title_fullStr | A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title_full_unstemmed | A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title_short | A roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
title_sort | roadmap to surgery in osteogenesis imperfecta: results of an international collaboration of patient organizations and interdisciplinary care teams |
topic | Research Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8519518/ https://www.ncbi.nlm.nih.gov/pubmed/34180749 http://dx.doi.org/10.1080/17453674.2021.1941628 |
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