Patient-Reported Outcome Measures in Dysphagia: A Systematic Review of Instrument Development and Validation
Diseases of the Esophagus
Patel, D. A., Sharda, R., et al. (2017).
Diseases of the Esophagus, 30(5), 1-23.
This systematic review investigates the psychometric properties of dysphagia-related patient-reported outcome (PRO) measures for adults.
National Institute of Deafness and Communication Disorders, National Institutes of Health
Up to July 2015
Published English-language studies (not further specified)
37
In total, 34 dysphagia-related patient-reported outcome (PRO) measures were found, including condition-specific (e.g., multiple sclerosis, Parkinson's disease) and general dysphagia measures. The following high-quality measures demonstrated good psychometric properties:
<ul>
<li><strong>Esophageal cancer:</strong> Functional Assessment of Cancer Therapy Esophageal Cancer subscale (FACT-E), European Organization for Research and Treatment of Cancer Quality-of-Life with Esophageal Cancer 25 Items (EORTC QLQ-OG25), European Organization for Research and Treatment of Cancer Quality-of-Life with Esophageal Cancer 18 items (EORTC QLQ-OES18)</li>
<li><strong>Mechanical and neuromyogenic oropharyngeal dysphagia:</strong> Swallow Quality of Life Questionnaire (SWAL-QOL), Symptom Inventory for Oropharyngeal Dysphagia (SSQ), Swallowing Quality of Care (SWAL-CARE)</li>
<li><strong>Achalasia:</strong> Measure of Achalasia Disease Severity (MADS)</li>
<li><strong>Eosinophilic esophagitis:</strong> Dysphagia Short Questionnaire for Eosinophilic Esophagitis (DSQ-EoE)</li>
<li><strong>General dysphagia:</strong> Patient-Reported Outcomes Measurement Information System Gastrointestinal Symptom Scales (PROMIS-GI)</li>
</ul>
Limitations/concerns of the measures globally included limited responsiveness (ability to detect clinically significant change), and insufficient patient-centeredness.
Of the 34 dysphagia-related patient-reported outcome (PRO) measures found, the M.D. Anderson Dysphagia Inventory (MDADI) was a high-quality, rigorously-developed instrument for "upper aerodigestive neoplasm-attributable oropharyngeal dysphagia" (p. 21).
