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

Abstract

Objectives 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. Study Design A mixed-method study. Setting Tertiary pediatric center. Methods 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. Results 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. Conclusion 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.

Patient-Reported Outcome Measures That Describe the Feeding Skills Domain for Pediatric Feeding Disorder: A Clinimetric Review

“…All tools were available in English (per inclusion criteria), but there were also scales available in Greek (47), Turkish (48), and Brazilian‐Portuguese (49). Most of the PROMs were freely available in the literature, or via contact with the primary author, with the exception of the unnamed PROM (45), although this had only undergone development/content validity testing, so it is possible it will become available in the future as further psychometric evaluation is completed.…”

“…A total of 22 articles describing 14 PROMs were included for data extraction. These PROMs included: the 10‐question swallowing index (31); the Airway‐Dyspnoea‐Voice‐Swallow scale and PROM (32,33); the Behavioral Pediatrics Feeding Assessment Scale (BPFAS) (34,35); the Child and Oral Motor Proficiency Scale (ChOMPS) (36); Children’s Eating Behavior Inventory (CEBI) (37); Feeding and Swallowing Impact Scales (FS‐IS) (38); the Feeding Assessment Scale (39); the Feeding Impact Scales (40); the Four‐Item Measure of Texture Problems (41); the Parent Attribution for Child Eating Scale (42); the Pediatric Assessment Scale for Severe Feeding Problems (43); the Pediatric Eating Assessment Tool (Pedi‐EAT) (44); an unnamed PROM that investigates swallowing disorders in otherwise healthy infants and toddlers (45); and the Sensory Eating Problems (SEP) Scale (46).…”

Systematic review of validated parent-reported questionnaires assessing swallowing dysfunction in otherwise healthy infants and toddlers

“…The Parent-Reported Outcome Questionnaire for Swallowing Dysfunction in Healthy Infants and Toddlers was identified as the only tool that met the inclusion criteria of this systematic review [ 48 ]. However, the tool is still in the process of development and while the framework construction and content validity was established, the psychometric properties of the tool have not been established at this time.…”

“…The Edmonton PRO questionnaire for Swallowing Dysfunction in Healthy Infants and Toddlers [ 48 ] acknowledges the gap in the literature surrounding the assessment of OHITs for SwD. The authors presented a study that adhered to PRO guidelines to identify relevant items related to SwD in this population.…”

Current opinion in otolaryngology and head and neck surgery: the role of the otolaryngologist in the management of pediatric dysphagia

“…In the pediatric population, parent reported questionnaires could provide unique insight. Examples of parent-reported dysphagia questionnaires include PEDI-EAT-10 and the Parent Reported Outcome Questionnaire for Swallow Dysfunction in Healthy Infants and Toddlers, amongst several others [10,11].…”