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Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets
OBJECTIVE/DESIGN/SETTING: This retrospective study sought voluntary participation from leading cleft centres from Europe and Brazil regarding core outcome measures. The results of this study would inform the debate on core outcome consensus pertaining to the European Reference Network for rare disea...
Autores principales: | , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Oxford University Press
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10687512/ https://www.ncbi.nlm.nih.gov/pubmed/37279564 http://dx.doi.org/10.1093/ejo/cjad023 |
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author | Mossey, Peter A Lai, Jason Meazzini, Maria Costanza Breugem, Corstiaan Mark, Hans Mink van der Molen, Aebele B Persson, Martin Davies, Gareth Ozawa, Terumi Okada |
author_facet | Mossey, Peter A Lai, Jason Meazzini, Maria Costanza Breugem, Corstiaan Mark, Hans Mink van der Molen, Aebele B Persson, Martin Davies, Gareth Ozawa, Terumi Okada |
author_sort | Mossey, Peter A |
collection | PubMed |
description | OBJECTIVE/DESIGN/SETTING: This retrospective study sought voluntary participation from leading cleft centres from Europe and Brazil regarding core outcome measures. The results of this study would inform the debate on core outcome consensus pertaining to the European Reference Network for rare diseases (ERN CRANIO) and achieve a core outcome set for cleft care providers worldwide. INTERVENTION/METHOD: Five orofacial cleft (OFC) disciplines were identified, within which all of the International Consortium of Health Outcomes Measurement (ICHOM) outcomes fall. One questionnaire was designed for each discipline and comprised 1. the relevant ICHOM’s outcomes within that discipline, and 2. a series of questions targeted to clinicians. What core outcomes are currently measured and when, did these align with the ICHOM minimum, if not how did they differ, and would they recommend modified or additional outcomes?. RESULTS: For some disciplines participants agreed with the ICHOM minimums but urged for earlier and more frequent intervention. Some clinicians felt that some of the ICHOM standards were compatible but that different ages were preferred and for others the ICHOM standards were acceptable but developmental stages should be preferred to absolute time points. CONCLUSION/IMPLICATIONS: Core outcomes for OFC were supported in principle but there are differences between the ICHOM recommendations and the 2002 WHO global consensus. The latter are established in many centres with historical archives of OFC outcome data, and it was concluded that with some modifications ICHOM could be moulded into useful core outcomes data for inter-centre comparisons worldwide. |
format | Online Article Text |
id | pubmed-10687512 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Oxford University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-106875122023-12-01 Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets Mossey, Peter A Lai, Jason Meazzini, Maria Costanza Breugem, Corstiaan Mark, Hans Mink van der Molen, Aebele B Persson, Martin Davies, Gareth Ozawa, Terumi Okada Eur J Orthod Original Articles OBJECTIVE/DESIGN/SETTING: This retrospective study sought voluntary participation from leading cleft centres from Europe and Brazil regarding core outcome measures. The results of this study would inform the debate on core outcome consensus pertaining to the European Reference Network for rare diseases (ERN CRANIO) and achieve a core outcome set for cleft care providers worldwide. INTERVENTION/METHOD: Five orofacial cleft (OFC) disciplines were identified, within which all of the International Consortium of Health Outcomes Measurement (ICHOM) outcomes fall. One questionnaire was designed for each discipline and comprised 1. the relevant ICHOM’s outcomes within that discipline, and 2. a series of questions targeted to clinicians. What core outcomes are currently measured and when, did these align with the ICHOM minimum, if not how did they differ, and would they recommend modified or additional outcomes?. RESULTS: For some disciplines participants agreed with the ICHOM minimums but urged for earlier and more frequent intervention. Some clinicians felt that some of the ICHOM standards were compatible but that different ages were preferred and for others the ICHOM standards were acceptable but developmental stages should be preferred to absolute time points. CONCLUSION/IMPLICATIONS: Core outcomes for OFC were supported in principle but there are differences between the ICHOM recommendations and the 2002 WHO global consensus. The latter are established in many centres with historical archives of OFC outcome data, and it was concluded that with some modifications ICHOM could be moulded into useful core outcomes data for inter-centre comparisons worldwide. Oxford University Press 2023-06-04 /pmc/articles/PMC10687512/ /pubmed/37279564 http://dx.doi.org/10.1093/ejo/cjad023 Text en © The Author(s) 2023. Published by Oxford University Press on behalf of the European Orthodontic Society https://creativecommons.org/licenses/by-nc/4.0/This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial License (https://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com |
spellingShingle | Original Articles Mossey, Peter A Lai, Jason Meazzini, Maria Costanza Breugem, Corstiaan Mark, Hans Mink van der Molen, Aebele B Persson, Martin Davies, Gareth Ozawa, Terumi Okada Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title | Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title_full | Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title_fullStr | Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title_full_unstemmed | Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title_short | Core outcomes for orofacial clefts: reconciling traditional and ICHOM minimum datasets |
title_sort | core outcomes for orofacial clefts: reconciling traditional and ichom minimum datasets |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10687512/ https://www.ncbi.nlm.nih.gov/pubmed/37279564 http://dx.doi.org/10.1093/ejo/cjad023 |
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