Factors related to retention in a longitudinal study of infants at familial risk for autism.

Abstract

Reporting retention data is critical to determining the soundness of a study's conclusions (internal validity) and broader generalizability (external validity). Although selective attrition can lead to overestimates of effects, biased conclusions, or overly expansive generalizations, retention rates are not reported in many longitudinal studies. We examined multiple child- and family-level factors potentially associated with retention in a longitudinal study of younger siblings of children with autism spectrum disorder (ASD; n=304) or typical development (n=163). The sample was followed from the first year of life to 36months of age, for up to 7 visits. Of the 467 infant siblings who were consented and participated in at least one research visit, 397 (85.0%) were retained to study completion at 36months. Retention rates did not differ by familial risk group (ASD-risk vs. Low-risk), sex, race, ethnicity, age at enrollment, number of children in the family, maternal employment, marital status, or parent concerns about the child at enrollment. A stepwise regression model identified 4 variables that, together, provided the most parsimonious predictive model of study retention: maternal education, maternal age at child's birth, travel distance to the study site, and diagnostic outcome classification at the final study visit. The retained and not-retained groups did not differ on most demographic and clinical variables, suggesting few threats to internal and external validity. The significantly higher rate of retention of children diagnosed with ASD (95%) than typically developing children (83%) may, however, present biases when studying recurrence risk. We conclude by describing engagement and tracking methods that can be used to maximize retention in longitudinal studies of children at risk of ASD.