Frequency of participation and association with functioning in adolescents born extremely preterm – Findings from a population-based cohort in northern Germany

Background: Outcomes after extremely preterm birth (<28 weeks gestation) have been studied intensely, and follow-up into adulthood is well-established. Following the introduction of the International Classification of Functioning, Disability and Health, participation has been recognized to be a relevant outcome in rehabilitation research. During adolescence, participation is crucial to adapting to new social roles. The aim of our study was to investigate participation in the domains Autonomy, Relationships and Community Recreation. Methods: Participation was assessed as part of a cross-sectional, population-based study in a German federal state examining all adolescents born between January 1997 and December 1999 at under 27 weeks gestation. Of the surviving 90 adolescents, 72 (80%) were followed-up at age 14 to 17. Frequency of participation was assessed using the short form of the Questionnaire of Young People's Participation and compared to matched peers. Associations with physical, cognitive, and psychological functioning and contextual factors were examined using multivariate regression. Results: Frequency of participation in Autonomy, Relationships, and Community Recreation in adolescents born extremely preterm was significantly lower than that of matched peers from the general population (p < 0,001). Lower frequency of participation in Autonomy and Relationships was associated with severe physical and cognitive impairment, and psychological problems. Fifty-seven percent of the adjusted variance in Autonomy and 31% of the adjusted variance in Relationships was explained by our regression models. Conclusion: Further research is warranted to investigate additional factors associated with the restricted frequency of participation of adolescents born preterm to design suitable interventions for improving participation.