Predictors of Adolescents’ Consent to Use Health Records for Research and Results from Data Collection in a Swedish Twin Cohort

Abstract

Introduction: Non-random selection into a study population due to differences between consenters and non-consenters may introduce participation bias. Past investigations of factors predicting consent to collection of medical health records for research imply that age, sex, health status, 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 the Child and Adolescent Twin Study in Sweden (CATSS) responded to a questionnaire with information on sex, individual's health, height, weight, and parental factors. The questionnaire included a question for consent to collection of medical health records. Predictors for consent were analyzed using logistic regression. Additionally, regional differences in the collection of health records of consenters were evaluated. Results: Males were significantly less likely to consent compared to females (OR 0.74, 95% CI 0.64-0.85). The twin siblings' decision to consent was strongly associated with consent (OR 10.9, 95% CI 8.76-13.5), and individuals whose parents had responded to the original CATSS study 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 between geographical regions of Sweden. Conclusion: We identified several predictors for adolescents' consent to collection of their medical health records. Further selection was introduced through the subsequent record collection. Whether this will induce participation bias in future studies depends on the research questions' relationship to the identified predictors.

Sources of potential bias when combining routine data linkage and a national survey of secondary school-aged children: a record linkage study

“…Approximately one-in-two young people aged 11-16 years consented to data linkage within the present study; a rate comparable to that of adult populations (typically ranging between 34 and 86%) [33,34]. Regarding demographic predictors of consent, student gender appeared to have little discernible effect on decision to consent, a contrasting finding to that of Ullemar and colleagues, who explored provision of consent to accessing health records among a Swedish adolescent twin cohort [35]. They found that males were 25% less likely to consent compared to females.…”

Self‐selection bias in eating disorders outcomes research: Does treatment response of underweight research participants and non‐participants differ?

“…Research studies comparing those who consent to those who do not consent to participate in treatment studies are scarce, primarily because data for those who do not consent (non‐participants) are either not available or not collected. Demographic variables including sex, age, and health status have been associated with the likelihood of consent across all study types, though the findings are mixed in terms of direction or consistency of effects (Ullemar et al, ). Studies of psychiatric patients comparing illness severity between participants and non‐participants also show mixed findings.…”

Conducting Clinical Trials in Twin Populations: A Review of Design, Analysis, Recruitment and Ethical Issues for Twin-Only Trials

“…Another recruitment challenge in twin-only trials relates to obtaining consent. Research suggests that consent of a twin is substantially more likely if their co-twin consents (Ullemar et al, 2015) and that twins or their caregivers are more likely to consent if both twins will receive the same treatment, at least in the neonatal setting (Bernardo et al, 2015). Consent is especially complex when the twins are minors and their caregivers are the decision-makers due to concerns over the potential outcomes of treatment and the vulnerability of the children.…”