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The Primary objective of this article is to determine the factors associated with retention of children and adolescents with acquired brain injury (ABI) and their families in two prospective longitudinal cohort studies. The study cohort consists of 192 families with a child with ABI who was admitted to McMaster Children’s Hospital (Hamilton, Ontario, Canada) between November 2001 and December 2003. The first study followed this cohort from discharge to two years post-ABI. After a one-year funding gap, the subsequent study followed the same cohort for another four years, which resulted in up to seven years of follow-up. Strategies adopted by the research team to enhance the retention were reviewed, and the possible impact of attrition on study outcomes was evaluated. At the end of the first two years, 175 of the 192 families (91%) remained; at the end of the succeeding follow-up study, 78 of the 87 participant families (90%) remained. No statistically significant difference in demographics and the variables related to ABI was found between those who were lost to follow-up and those who remained in the study. The results suggested that there is no predictable pattern in participants who are lost to followup and those that remain. Proactive steps, such as those retention strategies discussed in the manuscript, should be taken by researchers to address this challenging issue of retention in pediatric ABI longitudinal research.

The Challenges of Loss to Follow-up in Longitudinal Pediatric Acquired Brain Injury Research: One Research Team’s Experiences