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Factors associated with research participation in a large primary care practice-based pediatric cohort: Results from
Xuedi Li1, Charles D G Keown-Stoneman2,3, Cornelia M Borkhoff1,3,4,5
1Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
Insights
Participant retention in pediatric cohort studies is key. Factors like socioeconomic status and child health influence research participation, guiding strategies for better engagement and study success.
Area of Science:
- Pediatric research
- Public health
- Epidemiology
Background:
- Longitudinal cohort studies aim for high participant retention, but attrition is a common challenge.
- Understanding attrition determinants is crucial for developing targeted strategies to improve study participation.
- This study focuses on identifying factors associated with research participation in a large pediatric primary care cohort.
Purpose of the Study:
- To identify factors associated with research participation in the TARGet Kids! cohort.
- To inform the development of strategies to enhance participant retention in pediatric research.
Main Methods:
- Longitudinal cohort study (2008-2020) including children in the TARGet Kids! network.
- Examined sociodemographic, health, and study design factors related to research participation.
- Used generalized linear mixed effects models and Cox proportional hazard models to analyze primary (visit attendance) and secondary (withdrawal time) outcomes.
Main Results:
- Included 10,412 children with 62,655 eligible follow-up visits.
- 68.4% attended at least one follow-up visit; 6.4% withdrew.
- Key factors associated with participation: child age, ethnicity, maternal age/education, family income, parental employment, chronic conditions, study site, and questionnaire data completeness.
Conclusions:
- Socioeconomic status, demographics, chronic conditions, and data completeness impact participation in pediatric cohort studies.
- Retention strategies should involve parent engagement, clear communication, multilingual support, and streamlined questionnaires.
- Parent partner input was integral to study design and interpretation.
Background:
All longitudinal cohort studies strive for high participant retention, although attrition is common. Understanding determinants of attrition is important to inform and develop targeted strategies to improve study participation. We aimed to identify factors associated with research participation in a large children's primary care cohort study.
Methods:
In this longitudinal cohort study between 2008 and 2020, all children who participated in the Applied Research Group for Kids (TARGet Kids!) were included. TARGet Kids! is a large primary care practice-based pediatric research network in Canada with ongoing data collection at well-child visits. Several sociodemographic, health, and study design factors were examined for their associations with research participation. The primary outcome was attendance of eligible research follow-up visits. The secondary outcome was time to withdrawal from the TARGet Kids! study. Generalized linear mixed effects models and Cox proportional hazard models were fitted. We have engaged parent partners in all stages of this study.
Results:
A total 10,412 children with 62,655 total eligible research follow-up visits were included. Mean age at enrolment was 22 months, 52% were male, and 52% had mothers of European ethnicity. 68.4% of the participants attended at least 1 research follow-up visit. Since 2008, 6.4% of the participants have submitted a withdrawal request. Key factors associated with research participation included child age, ethnicity, maternal age, maternal education level, family income, parental employment, child diagnosis of chronic health conditions, certain study sites, and missingness in questionnaire data.
Conclusions:
Socioeconomic status, demographic factors, chronic conditions, and missingness in questionnaire data were associated with research participation in this large primary care practice-based cohort study of children. Results from this analysis and input from our parent partners suggested that retention strategies could include continued parent engagement, creating brand identity and communication tools, using multiple languages and avoiding redundancy in the questionnaires.
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