French-Canadian Cross-Cultural Adaptation of the SWAL-QOL and the SSQ and A Preliminary Psychometric Assessment for Their Use in an Oculopharyngeal Muscular Dystrophy (OPMD) Population (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.
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.
Muscle & Nerve, 2019
ABSTRACTIntroduction: There is no patient‐reported outcome (PRO) questionnaire specifically designed to assess oropharyngeal dysphagia in oculopharyngeal muscular dystrophy (OPMD). To select a suitable questionnaire, content validity of the existing questionnaires must be assessed. This study sought (1) to identify dysphagia‐related symptoms in OPMD and (2) to assess content validity of currently available PRO for the assessment of dysphagia severity in OPMD. Methods: A two‐step literature review was conducted of dysphagia‐related symptom identification and oropharyngeal dysphagia‐related PRO. Symptoms were validated with an expert panel by using a Delphi survey. Content validity of PRO questionnaires was documented through content analysis. Results: Ten PRO questionnaires were identified. None of the questionnaires cover the entire symptom spectrum in OPMD and thus lack content validity. Discussion: The development and validation of a new PRO questionnaire to assess dysphagia in OP...
Head & neck, 2018
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Validation of the Dutch Version of the M.D. Anderson Dysphagia Inventory for Neurogenic Patients
Folia Phoniatrica et Logopaedica
Background/Aim: The aim of this study was to validate the Dutch-language version of the M.D. Anderson Dysphagia Inventory (MDADI) for patients with neurogenic oropharyngeal dysphagia (OD). Methods: One hundred and seventy-eight patients with neurogenic OD and 92 healthy control subjects completed the MDADI and the Dutch version of the Swallowing Quality-of-Life Questionnaire (SWAL-QOL-NL). Exclusion criteria were: suffering from a concurrent head-and-neck oncological disease, scoring below 23 on a Mini Mental State Examination, being older than 85 years, and being illiterate or blind. None of the patients was in a palliative state of disease. Floor and ceiling effects, known-groups validity, internal consistency, construct validity, and criterion validity were assessed. Results: The MDADI total score showed no floor or ceiling effects for the patient group. Known-groups validity was confirmed by group differences in score distributions between patients and healthy control subjects. ...
Clinical characteristics of dysphagia-related quality of life questionnaires
2017
Dysphagia can interfere with quality of life (QOL) in several aspects. The broad goal of this study was to carry out a review of questionnaires assessing oropharyngeal dysphagia-related QOL that were used in both patients with neurological and oncological disorders. The specific goals were: 1) to evaluate the utility for clinical practice in terms of: readability, number of items, domains and sub-domains, type of scale, scoring procedures, cutoff point, burden (time to complete the questionnaire), administration mode, and adaptation into other languages; 2) to describe the populations in which the questionnaires were used. The literature search was carried out using the electronic databases PUBMED, SCOPUS, and SCIELO. All available papers up to June 2015 were included. The studies were chosen according to selected MESH terms, and from those published in English, French, Spanish, and Portuguese. Of the available publications, 136 studies were included, and they used five questionnair...
Validity and Reliability of the Persian Version of the Dysphagia Handicap Index (DHI)
2015
Introduction: The Dysphagia Handicap Index (DHI) is one of the instruments used for measuring a dysphagic patient’s self-assessment. In some ways, it reflects the patient’s quality of life. Although it has been recognized and widely applied in English speaking populations, it has not been used in its present forms in Persian speaking countries. The purpose of this study was to adapt a Persian version of the DHI and to evaluate its validity, consistency, and reliability in the Persian population with oropharyngeal dysphagia. Materials and Methods: Some stages for cross-cultural adaptation were performed, which consisted in translation, synthesis, back translation, review by an expert committee, and final proof reading. The generated Persian DHI was administered to 85 patients with oropharyngeal dysphagia and 89 control subjects at Zahedan city between May 2013 and August 2013. The patients and control subjects answered the same questionnaire 2 weeks later to verify the test-retest re...
Current Otorhinolaryngology Reports, 2023
Purpose of Review To provide an overview of current concepts and considerations in the measurement of dysphagia-related quality of life (QoL) for people with head and neck disease. We describe key psychometric and other tool properties that are important to consider when deciding which dysphagia QoL tool to use in practice. The review seeks to establish which tool/s best meet the required properties. Recent Findings Currently, no single dysphagia QoL tool meets all criteria. However, a few (SWAL QoL, MDADI, SOAL) meet several parameters and we highlight the current evidence base for these assessments. Summary QoL is essential to providing holistic clinical care and could also be an important outcome in research when evaluating interventions. Existing tools may benefit from re-validation studies which take account of progress made in the fields of instrument development, cross-cultural validity and patient centredness. It is also crucial to recognise that the value of capturing QoL in clinical practice is only realised by subsequent follow-up with the individual patient.
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...