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Parent-Reported Outcome Questionnaire for Swallowing Dysfunction in Healthy Infants and Toddlers: Construction and Content Validation.

  • Baqays, Abdulsalam1, 2
  • Johannsen, Wendy3
  • Rashid, Marghalara4
  • Jaffal, Hussein1
  • Hicks, Anne5
  • Jeffery, Caroline1
  • Seikaly, Hadi1
  • El-Hakim, Hamdy1
  • 1 Division of Otolaryngology, University of Alberta, Edmonton, Alberta, Canada. , (Canada)
  • 2 Division of Otolaryngology, King Saud University, Riyadh, Saudi Arabia. , (Saudi Arabia)
  • 3 Department of Pediatric Speech Language Pathology, Stollery Children's Hospital, Edmonton, Alberta, Canada. , (Canada)
  • 4 Department of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Alberta, Canada. , (Canada)
  • 5 Department of Pediatrics, Division of Pediatric Respiratory Medicine, University of Alberta, Edmonton, Alberta, Canada. , (Canada)
Published Article
SAGE Publications
Publication Date
Dec 08, 2020
DOI: 10.1177/0194599820970950
PMID: 33287657


There is limited epidemiological information on swallowing dysfunction (SwD) in otherwise healthy infants and toddlers (OHITs). Cost, invasiveness, expertise, and resources constrain the repeatability and utility of instrumental diagnostic tests. A parent-reported outcomes (PRO) tool has the potential to mitigate these disadvantages. Hence, we set out to develop and validate a novel PRO tool to assess SwD in OHITs. A mixed-method study. Tertiary pediatric center. We recruited parents of OHITs with SwD and excluded those with a confounding diagnosis (syndromes or neurological impairment). Interviews were conducted and thematically analyzed to extract the relevant domains and items. A similar analytical method was performed on the reports from a systematic review and literature search. Four verification sessions of parents and experts were conducted to maintain rigor. A panel of experts assessed and established the content validity of the items using a modified Delphi technique. We achieved information saturation after interviewing 10 parents and generated 7 domains with 72 items. Over the course of 3 rounds of modified Delphi content validation, the domains were reduced to 3 (swallowing, breathing, and illness) containing 21 items; a content validity index of 82.1% was achieved. We validated the content of a new PRO instrument to assess SwD in OHITs. The instrument is composed of 3 primary domains representing 21 items. This tool has the potential to screen for swallowing dysfunction and can assess management outcomes specifically for this population at a community level.

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