TY - JOUR
T1 - Core outcomes for orofacial clefts
T2 - reconciling traditional and ICHOM minimum datasets
AU - Mossey, Peter A.
AU - Lai, Jason
AU - Meazzini, Maria Costanza
AU - Breugem, Corstiaan
AU - Mark, Hans
AU - Mink van der Molen, Aebele B.
AU - Persson, Martin
AU - Davies, Gareth
AU - Ozawa, Terumi Okada
PY - 2023/12/1
Y1 - 2023/12/1
N2 - 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.
AB - 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.
UR - https://www.scopus.com/inward/record.uri?partnerID=HzOxMe3b&scp=85178499600&origin=inward
UR - https://www.ncbi.nlm.nih.gov/pubmed/37279564
U2 - 10.1093/ejo/cjad023
DO - 10.1093/ejo/cjad023
M3 - Article
C2 - 37279564
SN - 0141-5387
VL - 45
SP - 671
EP - 679
JO - European journal of orthodontics
JF - European journal of orthodontics
IS - 6
ER -