COSMIN database

Patient-reported outcome measures in dysphagia: a systematic review of instrument development and validation

Authors:
Patel, D. A., Sharda, R., Hovis, K. L., Nichols, E. E., Sathe, N., Penson, D. F., Feurer, I. D., McPheeters, M. L., Vaezi, M. F., and Francis, D. O.
Abstract:
OBJECTIVE: Patient-reported outcome (PRO) measures are commonly used to capture patient experience with dysphagia and to evaluate treatment effectiveness. Inappropriate application can lead to distorted results in clinical studies. A systematic review of the literature on dysphagia-related PRO measures was performed to (1) identify all currently available measures and (2) to evaluate each for the presence of important measurement properties that would affect their applicability.

DESIGN: MEDLINE via the PubMed interface, the Cumulative Index of Nursing and Allied Health Literature, and the Health and Psychosocial Instrument database were searched using relevant vocabulary terms and key terms related to PRO measures and dysphagia. Three independent investigators performed abstract and full text reviews. Each study meeting criteria was evaluated using an 18-item checklist developed a priori that assessed multiple domains: (1) conceptual model, (2) content validity, (3) reliability, (4) construct validity, (6) scoring and interpretation, and (7) burden and presentation.

RESULTS: Of 4950 abstracts reviewed, a total of 34 dysphagia-related PRO measures (publication year 1987-2014) met criteria for extraction and analysis. Several PRO measures were of high quality (MADS for achalasia, SWAL-QOL and SSQ for oropharyngeal dysphagia, PROMIS-GI for general dysphagia, EORTC-QLQ-OG25 for esophageal cancer, ROMP-swallowing for Parkinson's Disease, DSQ-EoE for eosinophilic esophagitis, and SOAL for total laryngectomy-related dysphagia). In all, 17 met at least one criterion per domain. Thematic deficiencies in current measures were evident including: (1) direct patient involvement in content development, (2) empirically justified dimensionality, (3) demonstrable responsiveness to change, (4) plan for interpreting missing responses, and (5) literacy level assessment.

CONCLUSION: This is the first comprehensive systematic review assessing developmental properties of all available dysphagia-related PRO measures. We identified several instruments with robust measurement properties in multiple diseases including achalasia, oropharyngeal dysphagia, post-surgical dysphagia, esophageal cancer, and dysphagia related to neurological diseases. Findings herein can assist clinicians and researchers in making more informed decisions in selecting the most fundamentally sound PRO measure for a given clinical, research, or quality initiative.
DOI:
10.1093/dote/dow028
URL:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5675017/pdf/nihms905288.pdf
Journal:
Dis Esophagus
issn:
1120-8694
Publication year:
2017
pages:
1-23
Symptom status:
Cognitive/mental state
Emotional state
Physical state
Functional status:
Physical functioning
Social functioning
General health perceptions / HRQoL:
Self-rated health
Age:
Adults (18-65)
Seniors (65+)
Disease:
Certain infections and parasitic diseases and related symptoms
Diseases of and symptoms related to the digestive system
Diseases of and symptoms related to the nervous system
Neoplasms and related symptoms
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified
PRO / non-PRO:
Patient Reported Outcome
Type of measurement instrument:
1 - Questionnaires
Instrument:
Bazaz - Bazaz score for dysphagia after anterior cervical spine surgery
CS-BED - Clinical Symptoms in Benign Esophageal Disease
DHI - Deglutition Handicap Index
DHI - Dysphagia Handicap Index
DSQ - Dysphagia Short Questionnaire
DSS - Dysphagia Severity Scale
DSST - Dysphagia-Specific Screening Tool
DYMUS - Dysphagia in Multiple Sclerosis questionnaire
EAT-10 - Eating Assessment Tool
EEsAI - Symptom-Based Index for Adults with Eosinophilic esophagitis
EORTC QLQ-OES18 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire in patients with oesophageal cancer 18 items
EORTC QLQ-OES24 - European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire for patients with oesophageal cancer 24 items
ESQ - Esophageal Symptoms Questionnaire
FACT-E - Functional Assessment of Cancer Therapy-Esophageal cancer
MADS - Measure of Achalasia Disease Severity
MDADI - MD Anderson Dysphagia Inventory
MDQ - Mayo Dysphagia Questionnaire (versions: MDQ-30; MDQ-2w)
NDS - New Dysphagia Score
PROMIS Gastrointestinal
QL-Eso-CA - Quality of Life in patients with resected Esophageal Cancer
ROMP - Radboud Oral Motor inventory for Parkinson’s disease   
SDI - Straumann Dysphagia Index
SDQ - Swallowing Disturbance Questionnaire
Self-report Symptom Inventory [Alias: SSQ - Sydney Swallow Questionnaire]
SLS - Oropharyngolaryngeal disorders in systemic sclerosis
SLS - Scleroderma Logopedic Scale
SOAL - Swallowing Outcome after Laryngectomy
SSQ - Symptom Inventory for Oropharyngeal Dysphagia
SWAL-CARE - Swallowing quality of Care
SWAL-QOL - Swallowing Quality of Life Questionnaire
UWQOL - University of Washington Quality-of-life Instrument (alias: UW QOL) (versions: UWQOL-V4; UWQOL-r - revised form)