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Defining and Measuring Developmental Regression During Childhood: A Scoping Review
Kirsten Furley1,2, Jenny Fairthorne1,3, Vishnu Priya Mohanakumar Sindhu4
1Department of Paediatrics, Monash University, Melbourne, Victoria, Australia.
Summary
Developmental regression in children lacks consistent definitions and measures, delaying diagnosis and intervention. Standardizing these is crucial for early identification and effective treatment.
Area of Science:
- Child development research
- Pediatric neurology
- Systematic review methodology
Background:
- Developmental regression in children is inconsistently defined and measured.
- This inconsistency leads to delayed diagnosis and intervention for affected children.
- A clear understanding of current definitions and measures is needed to improve clinical practice and research.
Purpose of the Study:
- To systematically examine published definitions and measures of developmental regression in children.
- To identify common features and variations in how developmental regression is defined and assessed across studies.
- To highlight the need for standardized approaches in research and clinical settings.
Main Methods:
- Conducted a comprehensive literature search across Medline, Embase, Cochrane, and PsycINFO databases.
- Applied systematic review methodology, with independent screening of studies.
- Performed thematic analysis on 157 included studies to categorize definitions and identify features and measures used.
Main Results:
- 157 studies were included, focusing on neurodevelopmental, neurodegenerative, epileptic, and genetic conditions.
- Most studies (79%) used operational definitions, and 93.6% specified skills lost.
- However, specific measures for developmental regression were rarely used (3.2%), and age of onset/duration were inconsistently reported.
Conclusions:
- Developmental regression is inconsistently defined and measured across pediatric research.
- A standardized approach is vital for early identification, improved diagnostic discovery, and enhanced research rigor.
- Standardization will facilitate collaboration to understand causal mechanisms and develop effective interventions.
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