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      Participant Experiences in the Environmental Determinants of Diabetes in the Young Study: Common Reasons for Withdrawing

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          Abstract

          Background. To characterize participant reasons for withdrawing from a diabetes focused longitudinal clinical observational trial (TEDDY) during the first three study years. Methods. 8677 children were recruited into the TEDDY study. At participant withdrawal staff recorded any reason parents provided for withdrawal. Reasons were categorized into (1) family characteristics and (2) protocol reasons. Families who informed staff of their withdrawal were classified as active withdrawals (AW); families without a final contact were considered passive withdrawals (PW). Results. Withdrawal was highest during the first study year ( n = 1220). Most families were AW ( n = 1549; 73.4%). PW was more common in the United States ( n = 1001; 37.8%) and among young mothers ( p = 0.001). The most frequent protocol characteristic was blood draw (55%) and the most common family reason was not having enough time (66%). The blood draw was more common among female participants; being too busy was more common among males. Both reasons were associated with study satisfaction. Conclusions. Results suggest that, for families of children genetically at risk for diabetes, procedures that can be painful/frightening should be used with caution. Study procedures must also be considered for the demands placed on participants. Study satisfaction should be regularly assessed as an indicator of risk for withdrawal.

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          The Environmental Determinants of Diabetes in the Young (TEDDY) study: study design.

          (2007)
          The primary objective of this multicenter, multinational, epidemiological study is the identification of infectious agents, dietary factors, or other environmental exposures that are associated with increased risk of autoimmunity and type 1 diabetes mellitus (T1DM). Factors affecting specific phenotypic manifestations such as early age of onset or rate of progression or with protection from the development of T1DM will also be identified. The Environmental Determinants of Diabetes in the Young (TEDDY) is an observational cohort study in which newborns who are younger than 4 months and have high-risk human leukocyte antigen alleles in the general population or are first-degree relatives (FDRs) of patients affected with T1DM will be enrolled. Six clinical centers in the USA and Europe will screen 361,588 newborns, of which it is anticipated that 17,804 will be eligible for enrollment with just over 7,800 followed. Recruitment will occur over 5 yr, with children being followed to the age of 15 yr. Identification of such factors will lead to a better understanding of disease pathogenesis and result in new strategies to prevent, delay, or reverse T1DM.
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            The Environmental Determinants of Diabetes in the Young (TEDDY): genetic criteria and international diabetes risk screening of 421 000 infants.

            The Environmental Determinants of Diabetes in the Young (TEDDY) study seeks to identify environmental factors influencing the development of type 1 diabetes (T1D) using intensive follow-up of children at elevated genetic risk. This study requires a cost-effective yet accurate screening strategy to identify the high-risk cohort. The TEDDY cohort was identified through newborn screening using human leukocyte antigen (HLA) class II genes based on criteria established with pre-TEDDY data. HLA typing was completed at six international centers using different genotyping methods that can achieve >98% accuracy. TEDDY developed separate inclusion criteria for the general population (GP) and first-degree relatives (FDRs) of T1D patients. The FDR eligibility includes nine haplogenotypes (DR3/4, DR4/4, DR4/8, DR3/3, DR4/4b, DR4/1, DR4/13, DR4/9, and DR3/9) for broad HLA diversity, whereas the GP eligibility includes only the first four haplogenotypes with DRB1*0403 as an exclusion allele. TEDDY has screened 414 714 GP infants, of which 19 906 (4.8%) were eligible, whereas 1415 of the 6333 screened FDR infants (22.2%) were eligible. High-resolution confirmation testing of the eligible subjects indicated that the low-cost and low-resolution genotyping techniques employed at the screening centers yielded an accuracy of 99%. There were considerable variations in eligibility rates among the centers for GP (3.5-7.4%) and FDR (19-32%) subjects. The eligibility rates among US ethnic groups were 0.9, 1.3, 5.0, and 6.9% for Asians, Black, Caucasians, and Hispanics, respectively. Different low-cost and low-resolution genotyping methods are useful for the efficient and accurate identification of a high-risk cohort for follow-up based on the TEDDY HLA inclusion criteria. © 2011 John Wiley & Sons A/S.
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              Predictors of attrition from a pediatric weight management program.

              The current study examined characteristics of families who initiated weight management treatment for their obese child/adolescent and withdrew prematurely. Participants (body mass index > or =95(th) percentile) were enrolled in a pediatric interdisciplinary weight management clinic. Retrospective chart review revealed noncompleters (n=116) completed > or =1 visit(s) but withdrew before completion of the initial 4-month treatment phase. Completers (n=96) completed the initial treatment phase. Completers and noncompleters were compared on baseline demographic, psychological, clinical, and laboratory measures. Regression analyses assessed the degree to which these factors predicted attrition. Fifty-five percent of patients withdrew prematurely from treatment. Noncompleters were more likely to be Medicaid recipients, black, older, and self-report greater depressive symptomatology and lower self-concept. These data have implications for the design of pediatric weight management intervention models that improve the rate of completion for economically disadvantaged and minority youth. Screening for depressive symptomatology may identify patients at risk for treatment dropout who could be targeted for increased support and retention strategies.
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                Author and article information

                Journal
                J Diabetes Res
                J Diabetes Res
                JDR
                Journal of Diabetes Research
                Hindawi Publishing Corporation
                2314-6745
                2314-6753
                2016
                22 November 2015
                : 2016
                : 2720650
                Affiliations
                1Department of Clinical Sciences, Lund University, CRC, Jan Waldenströms Gata 35, Skåne University Hospital (SUS), 20502 Malmö, Sweden
                2Health Informatics Institute, University of South Florida, 3650 Spectrum Boulevard, Suite 100, Tampa, FL 33612, USA
                3Barbara Davis Center for Childhood Diabetes, School of Medicine, University of Colorado Denver-AMC, 1775 Aurora Court, Aurora, CO 80045, USA
                4Colorado School of Public Health, Department of Community and Behavioral Health, University of Colorado Denver-AMC, 13001 E. 17th Place, Aurora, CO 80045, USA
                5Institute of Diabetes Research, Helmholtz Center Munich and Clinic on the right of Isar, Technical University Munich, Research Group Diabetes e.V., Ingolstaedter Landstrasse 1, 85764 Neuherberg, Germany
                6Department of Pediatrics, University of Turku, Kiinamyllynkatu 4-8, 20100 Turku, Finland
                7Department of Medical Humanities and Social Sciences, Florida State University College of Medicine, 1115 West Call Street, Tallahassee, FL 32306, USA
                8Pacific Northwest Diabetes Research Institute, 720 Broadway, Seattle, WA 98122, USA
                9Center for Biotechnology and Genomic Medicine, Medical College of Georgia, Georgia Regents University, 1120 15th Street, CA-4123, Augusta, GA 30912, USA
                Author notes

                Academic Editor: Nitin Gupta

                Article
                10.1155/2016/2720650
                4670659
                63d8d718-cce4-4747-8673-91055cc2c8a1
                Copyright © 2016 Barbro Lernmark et al.

                This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 January 2015
                : 2 May 2015
                Categories
                Research Article

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