Feeding development in healthy infants: A comparative framework for children with Spinal Muscular Atrophy - The DySMAnorm study.

OBJECTIVES

Normative data for swallowing parameters in non-dysphagic, healthy children for instrumental and clinical diagnostics are limited. In children with SMA, where due to the degenerative nature a deterioration in swallowing function in the first months of life is possible despite disease-modifying therapy, regular monitoring is required. The DySMA (Dysphagia in Spinal Muscular Atrophy) is a tool available to assess both physiological feeding development and specific abnormalities in children with SMA. We aimed to generate normative data for the DySMA in a sample of healthy infants to facilitate comparisons with children with SMA.

METHODS

Healthy infants and toddlers aged zero to 24 months were recruited and divided into seven age groups. Two speech-language pathologists assessed the children according to the DySMA study protocol. The data were evaluated descriptively and the inter-rater reliability was calculated.

RESULTS

A total of 92 healthy children were included. The DySMA total score ranged from 21 to 35 and showed excellent inter-rater reliability (ICC = .936; 95 % CI .752 to .984). The maximum score of 35 was first reached from 16 months onwards. Categories representing physiological development showed the most significant age-dependent changes, while no age-related development was observed in categories expressing pathology.

CONCLUSION

The DySMA effectively captures physiological feeding development. A higher total score reflects more comprehensive skills in children, while a lower score indicates a reduced range of abilities. By analyzing the normative sample, this tool makes it possible to represent a deviation from the norm for children with SMA.