Factors assessed in the first year of a longitudinal study predict subsequent study visit compliance: the TEDDY study

Jessica Melin; Kristian F Lynch; Markus Lundgren; Carin Andrén Aronsson; Helena Elding Larsson; Suzanne Bennett Johnson

doi:10.1186/s40001-023-01563-z

Factors assessed in the first year of a longitudinal study predict subsequent study visit compliance: the TEDDY study

Eur J Med Res. 2023 Dec 15;28(1):592. doi: 10.1186/s40001-023-01563-z.

Authors

Jessica Melin¹, Kristian F Lynch², Markus Lundgren^{3

4}, Carin Andrén Aronsson³, Helena Elding Larsson^{3

5}, Suzanne Bennett Johnson⁶

Affiliations

¹ Department of Clinical Science, Lund University, CRC Hus 60 Pl 11, Box 50332, 202 13, Malmö, Sweden. Jessica.melin@med.lu.se.
² Health Informatics Institute, Morsani College of Medicine, University of South Florida, Tampa, FL, USA.
³ Department of Clinical Science, Lund University, CRC Hus 60 Pl 11, Box 50332, 202 13, Malmö, Sweden.
⁴ Department of Pediatrics, Kristianstad Hospital, Kristianstad, Sweden.
⁵ Department of Pediatrics, Skåne University Hospital, Malmö, Sweden.
⁶ Department of Behavioral Sciences and Social Medicine, Florida State University College of Medicine, Tallahassee, FL, USA.

Abstract

Background: Compliance with a study protocol is central to meeting its research goals. In longitudinal research studies, data loss due to missed visits limit statistical power and introduce bias. The Environmental Determinants of Diabetes in the Young (TEDDY) study is a longitudinal multinational (US, Finland, Germany, and Sweden) investigation of children at risk for type 1 diabetes (T1D) that seeks to identify the environmental triggers of islet autoimmunity and T1D. The purpose of the current study was to identify sociodemographic variables and maternal characteristics assessed in the first year of TEDDY that were associated with study visit compliance in the subsequent 3 years.

Methods: Sociodemographic variables, maternal life-style behaviors, post-partum depression, maternal reactions to the child's T1D risk, and study-related variables were collected at child-age 6 months and 15 months. Multiple linear regression was used to examine the association of these variables to study visit compliance in the subsequent 3 years.

Results: Study visit compliance was highest in Sweden (p > 0.001), in children who were their mother's first child (p > 0.001), and whose mothers were older (p > 0.001) and more satisfied with the TEDDY study (p > 0.001). Father participation was also associated with better study visit compliance (p > 0.001). In contrast, children whose mothers smoked (p > 0.001), suffered from post-partum depression (p = 0.034), and were more anxious about their child's T1D risk (p = 0.002), completed fewer visits. Father's study satisfaction was also associated with study visit compliance (p = 0.029); however, it was not significant in models that included maternal study satisfaction.

Conclusions: Sociodemographic variables, maternal characteristics-including study satisfaction-and fathers' participation in the first year of a longitudinal study were associated with subsequent study visit compliance in a sample of children genetically at-risk for T1D followed for 4 years. This information can inform future strategies designed to improve study visit compliance in longitudinal pediatric studies.

Trial registration: NCT00279318, 06/09/2004.

Keywords: Child; Longitudinal study; Parent; Study satisfaction; Study visit compliance; Type 1 diabetes.

MeSH terms

Child, Preschool
Depression, Postpartum* / epidemiology
Diabetes Mellitus, Type 1* / epidemiology
Female
Germany / epidemiology
Humans
Infant
Longitudinal Studies
Male
Mothers

Associated data

ClinicalTrials.gov/NCT00279318