The Requirement for a Disease-Specific Patient-Reported Outcome Measure of Dysphagia in Oculopharyngeal Muscular Dystrophy
Muscle & Nerve
Côté, C., Gagnon, C., et al. (2019).
Muscle & Nerve, 59(4), 445-450.
This systematic review investigates the clinical validity of patient-reported outcome measurement instruments for assessing dysphagia severity in adults with oculopharyngeal muscular dystrophy.
Bioblast Pharma, LTD (Israel)
January 1990 to January 2017
Published, peer-reviewed studies (not further specified)
65
<div>For assessing dysphagia severity in adults with oculopharyngeal muscular dystrophy (OPMD), 10 patient-reported outcome questionnaires for oropharyngeal dysphagia (e.g., functional health status, health-related quality of life) lacked questions addressing the full spectrum of OPMD dysphagia-related symptoms, and many of the instruments contained irrelevant items for this population. The authors conclude that "the development of a specific self-report questionnaire is required for the assessment of dysphagia severity in OPMD" and should include test items assessing perceived obstruction, coughing, choking, difficulty with different food textures, and use of coping strategies.</div>
