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- Klassen, Anne F., et al.
(författare)
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Psychometric findings and normative values for the CLEFT-Q based on 2434 children and young adult patients with cleft lip and/or palate from 12 countries
- 2018
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Ingår i: CMAJ. - : CMA Joule Inc.. - 0820-3946. ; 190:15, s. 455-462
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Patients with cleft lip and/or palate can undergo numerous procedures to improve appearance, speech, dentition and hearing. We developed a cleft-specific patientreported outcome instrument to facilitate rigorous international measurement and benchmarking. METHODS: Data were collected from patients aged 8-29 years with cleft lip and/or palate at 30 hospitals in 12 countries between October 2014 and November 2016. Rasch measurement theory analysis was used to refine the scales and to examine reliability and validity. Normative CLEFT-Q values were computed for age, sex and cleft type. RESULTS: Analysis led to the refinement of an eating and drinking checklist and 12 scales measuring appearance (of the face, nose, nostrils, teeth, lips, jaws and cleft lip scar), health-related quality of life (psychological, social, school, speech distress) and speech function. All scales met the requirements of the Rasch model. Analysis to explore differential item functioning by age, sex and country provided evidence to support the use of a common scoring algorithm for each scale for international use. Lower (worse) scores on CLEFT-Q scales were associated with having a speech problem, being unhappy with facial appearance, and needing future cleft-related treatments, providing evidence of construct validity. Normative values for age, sex and cleft type showed poorer outcomes associated with older age, female sex and having a visible cleft. INTERPRETATION: The CLEFT-Q represents a rigorously developed instrument that can be used internationally to collect and compare evidence-based outcomes data from patients aged 8-29 years of age with cleft lip and/or palate.
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| 2. |
- Tsangaris, Elena, et al.
(författare)
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Translation and cultural adaptation of the CLEFT-Q into Arabic, Dutch, Hindi, Swedish, and Turkish
- 2018
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Ingår i: European Journal of Plastic Surgery. - : Springer Science and Business Media LLC. - 0930-343X .- 1435-0130. ; 41:6, s. 643-652
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Tidskriftsartikel (refereegranskat)abstract
- Background: Treatment for cleft lip and/or palate (CL/P) involves a multidisciplinary team of experts who aim to improve ones’ appearance, health-related quality of life, and speech function. To appropriately measure outcomes in CL/P from the patient perspective, a CL/P-specific patient-reported outcome (PRO) instrument is needed. The CLEFT-Q is a self-report PRO instrument developed to evaluate treatment outcomes in patients with CL/P. The aim of this study was to translate and culturally adapt the CLEFT-Q. Methods: The CLEFT-Q was translated and culturally adapted from English into Arabic, Dutch, Hindi, Swedish, and Turkish using guidelines set forth by the International Society for Pharmacoeconomics and Outcomes Research. For each language, two forward translations, one back translation, and cognitive debriefing interviews with patients were conducted. Results: The field test version of the CLEFT-Q consisted of 154 items across 13 scales. Forward translations for each language revealed few items that were difficult to translate into the various languages. Comparison of each back translation to the English version identified that a change in the meaning of an item was more common in the Turkish (n = 40, 26%) and Arabic (n = 17, 11%) translations, and required re-translation. Cognitive debriefing interviews involved 41 participants from plastic surgery centers in India, Qatar, Sweden, the Netherlands, and Turkey. Participants reported few difficulties in understanding the items, instructions, and response options in each CLEFT-Q translation. Conclusions: Semantic, idiomatic, experiential, and conceptual equivalence of the CLEFT-Q was achieved for all language versions, thus providing evidence of the CLEFT-Q’s transferability to other languages and cultures. Level of Evidence: Not ratable
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