Purpose: The aim of this study was to adapt the Upper Extremity Functional Index (UEFI) to an Italian population affected by Facioscapulohumeral muscular dystrophy (FSHD) by translating and validating this instrument in an Italian cohort.
Materials and methods: Five Italian FSHD patients were interviewed regarding the form and content of the translated instrument. Subsequently, fifty-two patients were recruited for the validation purpose by serially completing the UEFI-IT and a battery of clinical assessments and questionnaires. Finally, a subset of thirty-nine patients underwent test-retest reliability.
Results: The Italian translation of the UEFI was highly relevant to patients, had a level of test-retest reliability from "good" to "excellent" (ICC = 0.90 with 95% confidence interval between 0.82 and 0.95), and a satisfactory internal consistency (Cronbach's alpha = 0.96). Participants confirmed the usefulness and clearness of the tool in cultural validity. In known group validity, the UEFI-IT was significantly lower in patients unable to walk (24.10 ± 11.33 vs 55.71 ± 13.98, p < .0001; AUC = 0.9631) and in patients with longer disease duration (43.43 ± 17.16 vs 58.14 ± 13.71, p = 0.0034; AUC = 0.7359). Finally, the concurrent validity showed strong associations between the UEFI-IT and motor assessments, pain perception, and quality-of-life evaluations.
Conclusions: Overall, the UEFI-IT is an appropriate, valid, and reliable outcome measure for Italian-speaking FSHD patients.
Keywords: Facioscapulohumeral muscular dystrophy; Upper extremity functional index; italian validation; reliability.
It is important for the clinical community to have a valid instrument that can serially offer an accurate assessment of disability that involves questionnaires of the upper extremity functions.The Upper Extremity Functional Index (UEFI) is a deeply used region-specific patient-reported outcome measure (PROM) that investigates the patients’ current upper extremity functional status.The Italian validation of UEFI (UEFI-IT) is a valid instrument that allows patients to report on the functional status of their upper limbs.The UEFI-IT provides clinicians with a valid and reliable outcome measure that is easy to use and applicable to a large number of clinical presentations and for both clinical practice and research.