alexa Reasons for Staying as a Participant in the Environmental Determinants of Diabetes in the Young (TEDDY) Longitudinal Study | OMICS International | Abstract
ISSN: 2167-0870

Journal of Clinical Trials
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Research Article

Reasons for Staying as a Participant in the Environmental Determinants of Diabetes in the Young (TEDDY) Longitudinal Study

Barbro Lernmark1*, Kristian Lynch2, Lori Ballard2, Judith Baxter3, Roswith Roth4, Tuula Simell5 and Suzanne Bennett Johnson6
1Department of Clinical Sciences, Lund University, Skane University Hospital, CRC 72-60-11, SE-20502 Malmö, Sweden
2Pediatrics Epidemiology Center, University of South Florida, 3650 Spectrum Blvd., Suite 100, Tampa FL 33612, USA
3Barbara Davis Center for Childhood Diabetes, School of Medicine and Colorado School of Public Health, Department of Community and Behavioral Health, University of Colorado Denver-AMC, Mail Stop F527, 1775 Aurora Court, Aurora, CO, 80045, USA
4Institut für Diabetesforschung, Helmholtz Zentrum München, Ingolstädter Landstraße 1, D-85764 Neuherberg, Germany
5Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8 FIN-20520 Turku , Finland
6Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, 1115 West Call Street, Tallahassee FL 32306-4300, USA
Corresponding Author : Barbro Lernmark
Department of Clinical Sciences
Lund University
Skane University Hospital
CRC 72-60-11, SE-20502 Malmö, Sweden
Tel: +4640391908
Fax: +4640910665
E-mail: [email protected]
Received May 15, 2012; Accepted May 24, 2012; Published May 31, 2012
Citation: Lernmark B, Lynch K, Ballard L, Baxter J, Roth R, Simell T, et al. (2012) Reasons for Staying as a Participant in the Environmental Determinants of Diabetes in the Young (TEDDY) Longitudinal Study. J Clin Trials 2:114. doi:10.4172/2167-0870.1000114
Copyright: © 2012 Lernmark B, et al. This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Abstract

Objective: To assess parents’ opinions about their participation in the longitudinal, multicenter study - The Environmental Determinants of Diabetes in the Young (TEDDY) consortium. Methods: 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. Results: 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. Conclusions: 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.

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