Cross-cultural adaptation and validation of the Italian version of the patient-rated wrist/hand evaluation questionnaire (original) (raw)
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Quality of Life Research, 2021
Purpose. Patient-reported outcomes (PRO) assessing dysphagia are considered an essential component of clinical trials to consider how patients feel and function in response to treatments. The selected PRO needs to be translated in several languages using a systematic process ensuring its validity and equivalence for use in multicenter clinical trials. The main objective was to conduct the French-Canadian cross-cultural adaptation of the SWAL-QOL (FC SWAL-QOL) and the SSQ (FC SSQ) among an oculopharyngeal muscular dystrophy (OPMD) population. Methods. The principles of the International Society for Pharmacoeconomics and Outcomes Research Task Force method were followed for the FC SWAL-QOL and the FC SSQ. Cognitive interviews were conducted with 28 participants with OPMD. Known groups validity was assessed by comparison of the FC SWAL-QOL and the FC SSQ scores between groups of participants with OPMD known to differ in dysphagia severity, according to their drinking test score (n=21). Results. Equivalence issues were addressed during the cognitive interviews. Scores on the FC SSQ differed between the two groups divided by drinking test scores suggesting good known groups validity. Only two scales of the FC SWAL-QOL showed known group validity; the difference in the mean composite score was not signi cant, but this could be due to the small sample size. Conclusion: The SWAL-QOL and the SSQ were successfully translated into French-Canadian and adapted to an OPMD population. Additional validation should be considered depending on the intended population. The FC SSQ was better at discriminating dysphagia severity in a small sample size of OPMD participants.
A Systematic Review of Self-reported Swallowing Assessments in Progressive Neurological Disorders
Dysphagia, 2014
Introduction: Dysphagia experienced as a consequence of neurodegenerative disease can have severe consequences on a patient's health and well-being. Regular assessment of swallowing function can assist to achieve adequate nutrition and hydration. Here we review subjective swallowing assessments currently available are suitable for use in people with neurodegenerative disease. Measurement properties were reviewed for each tool and coverage of the World Health Organization's International Classification of Functioning, Disability and Health (WHO ICF) was considered. Methods: Assessments were identified following a review of the published literature Instruments were reviewed on the basis of reliability and validity, as well as administrative properties, such an interpretability, acceptability, and feasibility. Tools were also evaluated according to the WHO ICF framework. Results: In total, 19 studies were identified for full-text review from 13,315 abstracts. Nine self-reported dysphagia assessment tools suitable for use in progressive neurological disorders were identified. The Swallowing Quality of Life Questionnaire (SWAL-QOL) yields the strongest combination of reliability (including internal consistency and test-retest reliability) and convergent validity while simultaneously covering all WHO ICF domains. Lengthy administration time was identified as a limitation of the SWAL-QOL. Conclusions: The review highlights a relative lack of well validated self-report questionnaires in dysphagia for people with progressive neurological disease. Additional validation and evaluation of the clinical utility of the tools currently available is required to further promote an informed selection of available assessments.
Iranian Journal of Otorhinolaryngology, 2018
Speech and language therapists (SLTs) require proper tools to detect dysphagia in the early stages. One of these screening tools is the Northwestern Dysphagia Patient Check Sheet (NDPCS). However, this tool needs to be adapted, validated, and shown to be reliable for the Persian culture. The aim of the present study was to report the validity and reliability of the Persian NDPCS (P-NDPCS). The NDPCS has 28 items and five sections. Beaton's guidelines were followed in terms of the translation process. To report the content validity index (CVI) and the content validity ratio (CVR), eight SLTs experienced in swallowing disorders examined the content and face validities of the P-NDPCS in terms of the quality of translation, fluency, understandability, and the cultural context. In total, 140 patients with neurogenic and mechanical dysphagia were evaluated using the P-NDPCS. Internal consistency reliability was investigated using the Kuder-Richardson formula 20. The interclass correla...
The Dysphagia Handicap Index: Development and Validation
Dysphagia, 2011
Quality-of-life indicators for dysphagia provide invaluable information to the treating clinician regarding the success or failure of swallowing therapy. The purpose of this study was to develop a clinically efficient, statistically robust patient-reported outcomes tool that measures the handicapping effect of dysphagia on emotional, functional, and physical aspects of individual's lives. 60 statements describing the handicapping effect of dysphagia were collected from patient reports and divided into subscales of physical, emotional, and functional problems. The statements were presented to 77 individuals with dysphagia. Respondents replied never, sometimes, or always to each statement and rated their self-perceived dysphagia severity on a 7-point equal-appearing interval scale. Cronbach's a was performed to assess the internal consistency validation of the items within the questionnaire. The final questionnaire was reduced to 25 items and administered to 214 individuals with dysphagia and 74 controls. Test-retest was performed on 63 individuals with dysphagia. Cronbach's a for the initial and final versions was strong at r = 0.96 and r = 0.94, respectively. Significant differences occurred between the dysphagia and control groups. Test-retest reliability was strong. We present a new, easy-to-complete, statistically robust, patient-reported outcomes measure for assessing the handicapping effect of dysphagia.
Iranian Journal of Neurology, 2016
Background: Dysphagia as a common condition affecting many aspects of the patient’s life. The Dysphagia Handicap Index (DHI) is a reliable self-reported questionnaire developed specifically to measure the impact of dysphagia on the patient’s quality of life. The aim of this study was to translate the questionnaire to Persian and to measure its validity and reliability in patients with neurogenic oropharyngeal dysphagia. Methods: A formal forward-backward translation of DHI was performed based on the guidelines for the cross-cultural adaptation of self-report measures. A total of 57 patients with neurogenic dysphagia who were referred to the neurology clinics of Tehran University of Medical Sciences, Iran, participated in this study. Internal consistency reliability of the DHI was examined using Cronbach’s alpha, and test-retest reliability of the scale was evaluated using intraclass correlation coefficient (ICC). Results: The internal consistency of the Persian DHI (P-DHI) was consi...
Purpose. Patient-reported outcomes (PRO) assessing dysphagia are considered an essential component of clinical trials to consider how patients feel and function in response to treatments. The selected PRO needs to be translated in several languages using a systematic process ensuring its validity and equivalence for use in multicenter clinical trials. The main objective was to conduct the French-Canadian cross-cultural adaptation of the SWAL-QOL (FC SWAL-QOL) and the SSQ (FC SSQ) among an oculopharyngeal muscular dystrophy (OPMD) population. Methods. The principles of the International Society for Pharmacoeconomics and Outcomes Research Task Force method were followed for the FC SWAL-QOL and the FC SSQ. Cognitive interviews were conducted with 28 participants with OPMD. Known groups validity was assessed by comparison of the FC SWAL-QOL and the FC SSQ scores between groups of participants with OPMD known to differ in dysphagia severity, according to their drinking test score (n=21)....
Muscle & Nerve, 2017
Introduction-The Swallowing Quality of Life instrument (SWAL-QOL) is a patient-reported outcome (PRO) measure of swallowing-related quality of life (SR-QoL). Its psychometric properties in oculopharyngeal muscular dystrophy (OPMD) are not known. Methods-We administered the SWAL-QOL to U.S. OPMD Registry participants. We described SR-QoL profiles and assessed reliability and validity. Results-Mean composite score in 113 individuals with OPMD was 54.4 ± 20.7, indicating moderate impairment. Severe impairments were observed in eating duration, burden, and fatigue scales. Internal consistency reliability of all scales was found to be satisfactory, and 9 of 10 scales demonstrated adequate test-retest reliability. Data confirmed 86% of hypotheses, supporting construct validity. The SWAL-QOL limitations in OPMD include: floor/ceiling effects in 7 of 10 scales and low specificity of sleep, fatigue, and communication scales for dysphagia. Discussion-SR-QoL is reduced in OPMD. Given several limitations of the SWAL-QOL, development of an improved dysphagia-specific QoL instrument for OPMD is warranted.
Health and Quality of Life Outcomes, 2017
Background: The Swallowing Quality-of-Life Questionnaire (SWAL-QoL) is considered the gold standard for assessing health-related QoL in oropharyngeal dysphagia. The Dutch translation (DSWAL-QoL) and its adjusted version (aDSWAL-QoL) have been validated using classical test theory (CTT). However, these scales have not been tested against the Rasch measurement model, which is required to establish the structural validity and objectivity of the total scale and subscale scores. Thus, the purpose of this study was to examine the psychometric properties of these scales using item analysis according to the Rasch model. Methods: Item analysis with the Rasch model was performed using RUMM2030 software with previously collected data from a validation study of 108 patients. The assessment included evaluations of overall model fit, reliability, unidimensionality, threshold ordering, individual item and person fits, differential item functioning (DIF), local item dependency (LID) and targeting. Results: The analysis could not establish the psychometric properties of either of the scales or their subscales because they did not fit the Rasch model, and multidimensionality, disordered thresholds, DIF, and/or LID were found. The reliability and power of fit were high for the total scales (PSI = 0.93) but low for most of the subscales (PSI < 0.70). The targeting of persons and items was suboptimal. The main source of misfit was disordered thresholds for both the total scales and subscales. Based on the results of the analysis, adjustments to improve the scales were implemented as follows: disordered thresholds were rescaled, misfit items were removed and items were split for DIF. However, the multidimensionality and LID could not be resolved. The reliability and power of fit remained low for most of the subscales. Conclusions: This study represents the first analyses of the DSWAL-QoL and aDSWAL-QoL with the Rasch model. Relying on the DSWAL-QoL and aDSWAL-QoL total and subscale scores to make conclusions regarding dysphagia-related HRQoL should be treated with caution before the structural validity and objectivity of both scales have been established. A larger and well-targeted sample is recommended to derive definitive conclusions about the items and scales. Solutions for the psychometric weaknesses suggested by the model and practical implications are discussed.
Journal of Voice, 2019
The aim of the study was to evaluate the reliability and validity of the Italian SWAL-QOL (I-SWAL-QOL). The study consisted of five phases: item generation, reliability analysis, normative data generation, validity analysis, and responsiveness analysis. The item generation phase followed the five-step, cross-cultural, adaptation process of translation and back-translation. A group of 92 dysphagic patients was enrolled for the internal consistency analysis. Seventy-eight patients completed the I-SWAL-QOL twice, 2 weeks apart, for test-retest reliability analysis. A group of 200 asymptomatic subjects completed the I-SWAL-QOL for normative data generation. I-SWAL-QOL scores obtained by both the group of dysphagic subjects and asymptomatic ones were compared for validity analysis. I-SWAL-QOL scores were correlated with SF-36 scores in 67 patients with dysphagia for concurrent validity analysis. Finally, I-SWAL-QOL scores obtained in a group of 30 dysphagic patients before and after successful rehabilitation treatment were compared for responsiveness analysis. All the enrolled patients managed to complete the I-SWAL-QOL without needing any assistance, within 20 min. Internal consistency was acceptable for all I-SWAL-QOL subscales (a [ 0.70). Test-retest reliability was also satisfactory for all subscales (ICC [ 0.7). A significant difference between the dysphagic group and the control group was found in all I-SWAL-QOL subscales (p \ 0.05). Mild to moderate correlations between I-SWAL-QOL and SF-36 subscales were observed. I-SWAL-QOL scores obtained in the pretreatment condition were significantly lower than those obtained after swallowing rehabilitation. I-SWAL-QOL is reliable, valid, responsive to changes in QOL, and recommended for clinical practice and outcome research.
Dysphagia, 2017
The Dysphagia Outcome and Severity Scale (DOSS) is widely used to measure dysphagia severity based on videofluoroscopy (VFSS). This study investigated inter-rater reliability (IRR) of the DOSS. It also determined the effect of clinical experience, VFSS audio-recording and training on DOSS IRR. A quantitative prospective research design was used. Seventeen speech and language pathologists (SLPs) were recruited from an acute teaching hospital, Dublin (> 3 years' VFSS experience, n = 10) and from a postgraduate dysphagia programme in a university setting (< 3 years' VFSS experience; n = 7). During testing, participants viewed eight VFSS clips (5 with audio-recording). Each VFSS clip was independently rated using the DOSS scale. Four weeks later, the less experienced group attended a 1-h training session on DOSS rating after which DOSS IRR was re-tested. Cohen's kappa co-efficient was used to establish IRR. IRR of the DOSS presented only fair agreement (κ = 0.36, p <...