Abstract
Patients with cleft lip and palate experience various symptoms including esthetics, speech, occlusion and psychosocial aspects. Most of the conventional outcomes focused on esthetics and function and were based on clinicians’ point of view; not as much attention has been paid to psychosocial aspects, with a lack of patients’ point of view. CLEFT-Q is a cleft-specific questionnaire that measures patient-reported outcomes by 100-point scores. It covers all fields of symptoms experienced by cleft patients. It has been translated into multiple languages and designated as a part of the standard set of outcomes for cleft care. This study was conducted to generate a Japanese version of CLEFT-Q through translation and linguistic validation.
The process complied with guidelines to establish validity and reliability. Forward translation was conducted by two independent translators to generate two Japanese versions, from which reconciliation was conducted to generate a single Japanese version. This version was reverse-translated into English by another translator, and harmonization was conducted through discussions with the original authors to generate a tentative Japanese version. A pilot study on five cleft lip and palate patients was conducted, and further modifications were made based on the opinions from the patients and the authors to generate the final Japanese version of CLEFT-Q.
Introducing CLEFT-Q into clinical practice will improve the quality of cleft care through enforcement of conventional outcomes by adding patients’ point of view and evaluating psychosocial aspects. Consequently, more comprehensive and holistic care will be achieved. CLEFT-Q can be used to assist decision-making by patients themselves, or to evaluate the quality of care based on patients’ point of view. Further study to evaluate the validity and reliability of the Japanese version of CLEFT-Q is under way, to enable it to be used as a tool to provide scientific evidence.
