Adapting Patient-Reported Outcome Measures Across Languages and Cultures in Pediatric Rheumatology - An Integrated Methodology for Validation and ImplementationAnkita Rana Citation: Ankita Rana, "Adapting Patient-Reported Outcome Measures Across Languages and Cultures in Pediatric Rheumatology - An Integrated Methodology for Validation and Implementation", Universal Library of Medical and Health Sciences, Volume 04, Issue 03. Copyright: This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. AbstractThis monograph develops an integrated methodological framework for the cross-cultural adaptation and validation of patient-reported outcome (PRO) measures in pediatric rheumatology. The framework, here named the Cross-Cultural PRO Adaptation Framework for Pediatric Rheumatology (CC-PRO-PR), arose from the observation that the methodological literature on cross-cultural PRO adaptation, while well developed at the general level, leaves the specific demands of pediatric rheumatology insufficiently treated. Dual-perspective reporting from the youth and the caregiver, the developmental variability of the pediatric respondent, the disease-specific content of juvenile rheumatic conditions, and the small samples typical of rare-disease validation each require structural rather than residual methodological treatment. The monograph consolidates these considerations into a single workflow and positions that workflow alongside the established general-purpose guidelines that the field has developed over the past three decades. The monograph is intended for working specialists in pediatric rheumatology PRO measurement: researchers planning new adaptation studies, clinicians using or evaluating adapted instruments in routine care, instrument developers whose engagement supports adaptation by other teams, and institutions and funding bodies that evaluate adaptation proposals. The reader is expected to be familiar with the general vocabulary of PRO measurement and pediatric rheumatology; technical concepts are defined where introduced, and a glossary in the back matter consolidates the principal terms. The author declares no competing financial interests. The work received no external funding. Ethical approval for the validation study referenced as Case 1 in Chapter 4 was granted by the relevant institutional review board. Keywords: Download |
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