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

Abstract

Aim To develop a feeding scale for parents/care givers of individuals of all ages with genetic syndromes experiencing extensive feeding and swallowing problems. Second, to assess its validity and reliability in CHARGE syndrome. Methods The new Feeding Assessment Scale (FAS) was adapted from a scale for children who need prolonged tube feeding (Paediatric Assessment Scale for Severe Feeding Problems, PASSFP). Ten parents piloted the new scale before it was sent out with the PASSFP and feeding history questions. A subset completed the new scale again 4–8 weeks later. Results One hundred parents of individuals with CHARGE syndrome participated from around the world. The new scale had good construct validity, with a significant effect for an increased number of feeding risk factors having higher scale scores (P < 0.001). Face validity was high, as scores significantly differed between individuals whose parents identified their feeding difficulties as very mild, mild, moderate, severe and very severe (P < 0.001). Test–retest reliability (r = 0.94, P < 0.001) and internal consistency (Cronbach's alpha 0.91) were both high. There was significant convergent validity between the new scale and the PASSFP (r = −0.79, P < 0.001). Conclusions This new tool is reliable and valid for parents/care givers of individuals with CHARGE syndrome. It can be used to assess the current severity of feeding difficulties and to track progress before and after treatment. It expands upon previous existing tools in that it can be used in both individuals who are not tube fed, as well as in those who are, as well as across the life‐span.

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

“…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).…”

“…The target population for the majority of PROMs included was nonspecific (n = 8, 57%), but some were intended for specific populations, including otherwise healthy children (45), children with medical and/or developmental disabilities (37), those with laryngotracheal stenosis (32,33), CHARGE syndrome (39), tube‐fed children (43), and for children following supraglottoplasty (31) (see Table 1). The included PROMs described either evaluative (ie, documenting or describing the feeding skills observed) or discriminative (ie, comparing outcomes to cut‐scores or age reference values) purposes.…”