Abstract
To assess parents' opinions about their participation in the longitudinal, multicenter study - The Environmental Determinants of Diabetes in the Young (TEDDY) consortium. A survey was given to parents who had been in the study for ≥ 1 year. Parents rated the importance of different reasons for staying in TEDDY and how well different study components were working. Parents were also asked if they had suggestions for making TEDDY better and if they ever had thought of leaving TEDDY and if so, why. Out of the 3336 eligible families, 2000 completed the survey (59.1%); most (77.6%) were mothers. Survey completion was more common in European than US TEDDY sites and was associated with greater maternal education, more accurate perceptions about their child's risk of type 1 diabetes, longer participation in TEDDY and excellent attendance at TEDDY visits. "Having someone watching the child for development of T1DM" was most important reason given for staying in the study; other important reasons included "Helping science discover causes of diabetes" and "Getting child's antibody results". Most parents were very satisfied with the different components of TEDDY and had not thought of leaving the study. A minority (24%) of parents acknowledged some thoughts of leaving TEDDY and cited the blood draws, being too busy/not having enough time, the demanding protocol, and food diaries as their reasons for considering leaving. The study highlights factors important for successful implementation of demanding, longitudinal protocols. Friendly, devoted, skilled and knowledgeable staff with continuity makes the family comfortable. Keeping parents involved and informed on study progress is essential as is making procedures as smooth and painless as possible. Although the study is international the survey results were convergent across countries suggesting that the results have relevance to other similar studies to retain study participants.
Highlights
Longitudinal research is advantageous to understanding the natural history of a disease and the possible role of gene-environment interactions
Survey completion was more common in European than US TEDDY sites and was associated with greater maternal education, more accurate perceptions about their child’s risk of type 1 diabetes, longer participation in TEDDY and excellent attendance at TEDDY visits
“Having someone watching the child for development of type 1 diabetes mellitus (T1DM)” was most important reason given for staying in the study; other important reasons included “Helping science discover causes of diabetes” and “Getting child’s antibody results”
Summary
Longitudinal research is advantageous to understanding the natural history of a disease and the possible role of gene-environment interactions. Participant retention and protocol compliance is important in order to maintain statistical validity and avoid bias. One of the most challenging aspects is keeping the participants enrolled until the study endpoint is reached. The Environmental Determinants of Diabetes in the Young (TEDDY) study is a longitudinal multi-center, multi-national, epidemiological study, supported by the National Institutes of Health (NIH). The TEDDY consortium is comprised of 6 clinical centers, located in the United States (Washington, Colorado, Georgia/Florida), Finland, Sweden and Germany, and a data coordinating center in Tampa, Florida [1]. The primary objective of this study is identification of environmental exposures that are associated with increased risk of autoimmunity and type 1 diabetes mellitus (T1DM) [1]
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