Premium
New Feeding Assessment Scale for individuals with genetic syndromes: Validity and reliability in the CHARGE syndrome population
Author(s) -
Hudson Alexandra S,
StrattonGadke Kasee,
Hatchette Jill,
Blake Kim D
Publication year - 2021
Publication title -
journal of paediatrics and child health
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.631
H-Index - 76
eISSN - 1440-1754
pISSN - 1034-4810
DOI - 10.1111/jpc.15434
Subject(s) - medicine , cronbach's alpha , face validity , scale (ratio) , construct validity , convergent validity , reliability (semiconductor) , population , pediatrics , clinical psychology , gerontology , internal consistency , psychometrics , environmental health , power (physics) , physics , quantum mechanics
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.