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New Feeding Assessment Scale for individuals with genetic syndromes: Validity and reliability in the CHARGE syndrome

Alexandra S Hudson1, Kasee Stratton-Gadke2, Jill Hatchette3

  • 1Department of Pediatrics, University of Alberta, Edmonton, Alberta, Canada.

Journal of Paediatrics and Child Health
|March 8, 2021
PubMed

Insights

A new Feeding Assessment Scale (FAS) was developed and validated for parents of individuals with CHARGE syndrome. This reliable tool helps assess feeding difficulties across all ages and feeding types.

Area of Science:

  • Pediatric Gastroenterology
  • Genetics
  • Clinical Assessment Tools

Background:

  • Genetic syndromes often lead to significant feeding and swallowing problems across all ages.
  • Existing assessment tools may not adequately address the diverse needs of individuals with genetic syndromes and complex feeding issues.
  • A validated, parent-reported scale is needed to effectively monitor feeding challenges in this population.

Purpose of the Study:

  • To develop a novel Feeding Assessment Scale (FAS) for parents/caregivers of individuals with genetic syndromes experiencing extensive feeding and swallowing problems.
  • To evaluate the validity and reliability of the FAS in a population with CHARGE syndrome.
  • To create a tool applicable across the lifespan and for individuals with varying feeding methods (tube-fed and non-tube-fed).

Main Methods:

  • The Feeding Assessment Scale (FAS) was adapted from the Paediatric Assessment Scale for Severe Feeding Problems (PASSFP).
  • Ten parents piloted the FAS, which was then distributed with the PASSFP and feeding history questionnaires to 100 international parents of individuals with CHARGE syndrome.
  • A subset of participants completed the FAS again 4-8 weeks later to assess test-retest reliability.

Main Results:

  • The FAS demonstrated good construct validity, with higher scores correlating significantly with increased feeding risk factors (P < 0.001).
  • High face validity was observed, with significant score differences across parent-reported feeding difficulty severity levels (P < 0.001).
  • Excellent test-retest reliability (r = 0.94, P < 0.001) and internal consistency (Cronbach's alpha = 0.91) were found, along with significant convergent validity with the PASSFP (r = -0.79, P < 0.001).

Conclusions:

  • The developed Feeding Assessment Scale (FAS) is a reliable and valid tool for parents/caregivers of individuals with CHARGE syndrome.
  • The FAS can effectively assess the current severity of feeding difficulties and monitor treatment progress.
  • This scale offers a versatile, lifespan-appropriate assessment tool for both tube-fed and non-tube-fed individuals with genetic syndromes.
Abstract

Keywords:
behaviouralgastroenterologygeneral paediatricsgeneticsrehabilitation

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