A Systematic Review of Patient- or Proxy-Reported Validated Instruments Assessing Pediatric Dysphagia

Abstract

Objective Pediatric dysphagia occurs in 500,000 children each year; however, there is not a common tool to assess these children. Our aim was to identify validated patient- or parent-reported outcome assessment tools evaluating pediatric dysphagia. Data Sources Scopus, EMBASE, PubMed, Cochrane Library, and CINAHL electronic databases (all indexed years through August 2014). Review Methods Inclusion criteria included English-language articles containing instruments evaluated in children. Two investigators independently reviewed all articles, and the review was performed according to PRISMA guidelines (Preferred Reporting Items for Systematic Reviews and Meta-analyses). Results The initial search yielded 1697 abstracts; 158 studies were assessed further. Four symptom questionnaires, validated in adults, were used to report pediatric dysphagia outcomes. Four outcomes tools assessing dysphagia were validated in pediatrics in selected populations. The Dysphagia in Multiple Sclerosis questionnaire and the Dysphagia Symptom Questionnaire for eosinophilic esophagitis were validated in adolescents and adults. The Symptom Questionnaire for Eosinophilic Esophagitis was validated in children with eosinophilic esophagitis. The Pediatric Quality of Life Inventory Gastrointestinal Symptoms Module, validated in children with gastrointestinal disorders, includes 2 domains that assess swallowing function. Conclusion We did not identify any validated patient- or parent-reported outcome assessment tools examining dysphagia symptoms in a general pediatric population. However, we identified 4 questionnaires that have been validated in specific pediatric disease cohorts. Having a standardized assessment instrument validated in all children would allow clinicians to systematically report symptoms and compare results of pediatric clinical trials. With this in mind, we recommend establishing a standard questionnaire for the broader pediatric population.