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

Melin, Jessica LU ; Lynch, Kristian F. LU ; Lundgren, Markus LU ; Aronsson, Carin Andrén LU orcid ; Larsson, Helena Elding LU and Johnson, Suzanne Bennett LU (2023) In European Journal of Medical Research 28(1).
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... (More)

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.

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author
; ; ; ; and
organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
Child, Longitudinal study, Parent, Study satisfaction, Study visit compliance, Type 1 diabetes
in
European Journal of Medical Research
volume
28
issue
1
article number
592
publisher
BioMed Central (BMC)
external identifiers
  • pmid:38102669
  • scopus:85179902010
ISSN
0949-2321
DOI
10.1186/s40001-023-01563-z
language
English
LU publication?
yes
id
a49b1e3e-adca-46f0-b76c-bb6154d1ef13
date added to LUP
2024-01-04 11:08:24
date last changed
2024-04-19 07:24:41
@article{a49b1e3e-adca-46f0-b76c-bb6154d1ef13,
  abstract     = {{<p>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 &gt; 0.001), in children who were their mother’s first child (p &gt; 0.001), and whose mothers were older (p &gt; 0.001) and more satisfied with the TEDDY study (p &gt; 0.001). Father participation was also associated with better study visit compliance (p &gt; 0.001). In contrast, children whose mothers smoked (p &gt; 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.</p>}},
  author       = {{Melin, Jessica and Lynch, Kristian F. and Lundgren, Markus and Aronsson, Carin Andrén and Larsson, Helena Elding and Johnson, Suzanne Bennett}},
  issn         = {{0949-2321}},
  keywords     = {{Child; Longitudinal study; Parent; Study satisfaction; Study visit compliance; Type 1 diabetes}},
  language     = {{eng}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{European Journal of Medical Research}},
  title        = {{Factors assessed in the first year of a longitudinal study predict subsequent study visit compliance : the TEDDY study}},
  url          = {{http://dx.doi.org/10.1186/s40001-023-01563-z}},
  doi          = {{10.1186/s40001-023-01563-z}},
  volume       = {{28}},
  year         = {{2023}},
}