Predictors of adolescents' consent to use health records for research and results from data collection in a Swedish twin cohort

摘要

Introduction: Nonrandom selection into a study population due to differences betweenconsenters and non-consenters may introduce participation bias. Past investigations of factorspredicting consent to collection of medical health records for research imply that age, sex, healthstatus and education are of importance for participation, but disagree on the direction of effects.Very little is known about influences on consent from adolescents.Methods: Two cohorts of Swedish 15-year-old twins (total n=4,611) previously invited to theChild and Adolescent Twin Study in Sweden (CATSS) responded to a questionnaire withinformation on gender, individual’s health, height, weight and parental factors. The questionnaireincluded a question for consent to collection of medical health records. Predictors for consentwere analysed using logistic regression. Additionally, regional differences in the collection ofhealth records of consenters were evaluated.Results: Males were significantly less likely to consent compared to females (OR 0.74, 95% CI0.64-0.85). The twin sibling’s decision to consent was strongly associated with consent (OR10.9, 95% CI 8.76-13.5), and individuals whose parents had responded to the original CATSSstudy were more likely to consent to record collection at age 15 (OR 2.2, 95% CI 1.81-2.75).Results of the subsequent collection of consenters’ medical health records varied betweengeographical regions of Sweden.Conclusion: We identified several predictors for adolescents’ consent to collection of theirmedical health records. Further selection was introduced through the subsequent recordPage 3 of 32collection. Whether this will induce participation bias in future studies depends on the researchquestions’ relationship to the identified predictors.