Literature DB >> 21710195

Psychological impact of screening and prediction in type 1 diabetes.

Suzanne Bennett Johnson1.   

Abstract

Screening programs designed to identify persons at risk for type 1 diabetes via genetic and antibody testing are controversial because they typically target children, provide only a crude estimate of type 1 diabetes risk, and offer no means of preventing the disease. For this reason, genetic and antibody testing for type 1 diabetes risk is usually limited to carefully conducted research studies. The psychological impact of such screening programs include cognitive, emotional, and behavioral sequelae; the available literature has focused primarily on parents, and usually mothers, since the target of screening is usually infants or young children. Diabetes risk is a difficult construct to effectively communicate. Many individuals fail to accurately understand risk; inaccurate risk perceptions may increase over time and have been associated with early study withdrawal. Simply asking study participants if they understand the risk information provided is insufficient. Anxiety and worry are common reactions to learning that you or a loved one is at increased risk for type 1 diabetes. For most people, anxiety and worry dissipate with time but some individuals may be particularly vulnerable to prolonged anxiety or depression. Although there is no known means to prevent type 1 diabetes in at-risk individuals, families often report increased surveillance of those at risk and behavior changes to prevent the disease, potentially threatening the internal validity of the study.

Entities:  

Mesh:

Year:  2011        PMID: 21710195     DOI: 10.1007/s11892-011-0208-9

Source DB:  PubMed          Journal:  Curr Diab Rep        ISSN: 1534-4827            Impact factor:   4.810


  41 in total

Review 1.  Psychological and ethical aspects of prevention trials.

Authors:  R Roth
Journal:  J Pediatr Endocrinol Metab       Date:  2001       Impact factor: 1.634

2.  Psychological impact of islet cell-antibody screening. Preliminary results.

Authors:  S B Johnson; W J Riley; C A Hansen; M A Nurick
Journal:  Diabetes Care       Date:  1990-02       Impact factor: 19.112

3.  Communicating consequences of risky behaviors: Life expectancy versus risk of disease.

Authors:  Mirta Galesic; Rocio Garcia-Retamero
Journal:  Patient Educ Couns       Date:  2010-03-12

4.  Effects of insulin in relatives of patients with type 1 diabetes mellitus.

Authors: 
Journal:  N Engl J Med       Date:  2002-05-30       Impact factor: 91.245

5.  Parental reactions to information about increased genetic risk of type 1 diabetes mellitus in infants.

Authors:  Paula Simonen; Tapio Korhonen; Tuula Simell; Päivi Keskinen; Maarit Kärkkäinen; Mikael Knip; Jorma Ilonen; Olli Simell
Journal:  Arch Pediatr Adolesc Med       Date:  2006-11

6.  Prospective assessment in newborns of diabetes autoimmunity (PANDA): maternal understanding of infant diabetes risk.

Authors:  Stacy K Carmichael; Suzanne Bennett Johnson; Amy Baughcum; Kerri North; Diane Hopkins; Margaret G Dukes; Jin-Xiong She; Desmond A Schatz
Journal:  Genet Med       Date:  2003 Mar-Apr       Impact factor: 8.822

7.  Newborn screening for HLA markers associated with IDDM: diabetes autoimmunity study in the young (DAISY).

Authors:  M Rewers; T L Bugawan; J M Norris; A Blair; B Beaty; M Hoffman; R S McDuffie; R F Hamman; G Klingensmith; G S Eisenbarth; H A Erlich
Journal:  Diabetologia       Date:  1996-07       Impact factor: 10.122

Review 8.  Minimizing risks: the ethics of predictive diabetes mellitus screening research in newborns.

Authors:  Lainie Friedman Ross
Journal:  Arch Pediatr Adolesc Med       Date:  2003-01

9.  Maternal anxiety associated with newborn genetic screening for type 1 diabetes.

Authors:  Suzanne Bennett Johnson; Amy E Baughcum; Stacy K Carmichael; Jin-Xiong She; Desmond A Schatz
Journal:  Diabetes Care       Date:  2004-02       Impact factor: 19.112

10.  Maternal psychological reaction to newborn genetic screening for type 1 diabetes.

Authors:  Nicola J Kerruish; Priscilla L Campbell-Stokes; Andrew Gray; Tony R Merriman; Stephen P Robertson; Barry J Taylor
Journal:  Pediatrics       Date:  2007-07-03       Impact factor: 7.124

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  11 in total

1.  Reclassification of asymptomatic beta cell autoimmunity: a critical perspective.

Authors:  Mikael Knip; Jenni Selvenius; Heli Siljander; Riitta Veijola
Journal:  Diabetologia       Date:  2016-10-27       Impact factor: 10.122

Review 2.  Screening for Type 1 Diabetes in the General Population: A Status Report and Perspective.

Authors:  Emily K Sims; Rachel E J Besser; Colin Dayan; Cristy Geno Rasmussen; Carla Greenbaum; Kurt J Griffin; William Hagopian; Mikael Knip; Anna E Long; Frank Martin; Chantal Mathieu; Marian Rewers; Andrea K Steck; John M Wentworth; Stephen S Rich; Olga Kordonouri; Anette-Gabriele Ziegler; Kevan C Herold
Journal:  Diabetes       Date:  2022-04-01       Impact factor: 9.337

3.  Maternal anxiety about a child's diabetes risk in the TEDDY study: the potential role of life stress, postpartum depression, and risk perception.

Authors:  Roswith Roth; Kristian Lynch; Barbro Lernmark; Judy Baxter; Tuula Simell; Laura Smith; Ulrica Swartling; Anette-G Ziegler; Suzanne B Johnson
Journal:  Pediatr Diabetes       Date:  2014-08-01       Impact factor: 4.866

4.  Predicting Later Study Withdrawal in Participants Active in a Longitudinal Birth Cohort Study for 1 Year: The TEDDY Study.

Authors:  Suzanne Bennett Johnson; Kristian F Lynch; Judith Baxter; Barbro Lernmark; Roswith Roth; Tuula Simell; Laura Smith
Journal:  J Pediatr Psychol       Date:  2015-09-27

5.  Psychometric properties of the Pediatric Testing Attitudes Scale-Diabetes (P-TAS-D) for parents of children undergoing predictive risk screening.

Authors:  Kenneth P Tercyak; Darren Mays; Suzanne Bennett Johnson; Johnny Ludvigsson; Ulrica Swartling
Journal:  Pediatr Diabetes       Date:  2013-06-14       Impact factor: 4.866

6.  The association between stressful life events and respiratory infections during the first 4 years of life: The Environmental Determinants of Diabetes in the Young study.

Authors:  Roswith Roth; Kristian Lynch; Heikki Hyöty; Maria Lönnrot; Kimberly A Driscoll; Suzanne Bennett Johnson
Journal:  Stress Health       Date:  2019-04-04       Impact factor: 3.454

7.  Family adjustment to diabetes diagnosis in children: Can participation in a study on type 1 diabetes genetic risk be helpful?

Authors:  Laura B Smith; Xiang Liu; Suzanne Bennett Johnson; Roy Tamura; Helena Elding Larsson; Simi Ahmed; Riitta Veijola; Michael J Haller; Beena Akolkar; William A Hagopian; Marian J Rewers; Jeffrey Krischer; Andrea K Steck
Journal:  Pediatr Diabetes       Date:  2018-05-02       Impact factor: 3.409

8.  Parental Estimation of Their Child's Increased Type 1 Diabetes Risk During the First 2 Years of Participation in an International Observational Study: Results From the TEDDY study.

Authors:  Ulrica Swartling; Kristian Lynch; Laura Smith; Suzanne Bennett Johnson
Journal:  J Empir Res Hum Res Ethics       Date:  2016-05-30       Impact factor: 1.978

9.  Capillary blood islet autoantibody screening for identifying pre-type 1 diabetes in the general population: design and initial results of the Fr1da study.

Authors:  Jennifer Raab; Florian Haupt; Marlon Scholz; Claudia Matzke; Katharina Warncke; Karin Lange; Robin Assfalg; Katharina Weininger; Susanne Wittich; Stephanie Löbner; Andreas Beyerlein; Uta Nennstiel-Ratzel; Martin Lang; Otto Laub; Desiree Dunstheimer; Ezio Bonifacio; Peter Achenbach; Christiane Winkler; Anette-G Ziegler
Journal:  BMJ Open       Date:  2016-05-18       Impact factor: 2.692

10.  My Child Is Islet Autoantibody Positive: Impact on Parental Anxiety.

Authors:  Suzanne Bennett Johnson; Kristian F Lynch; Roswith Roth; Desmond Schatz
Journal:  Diabetes Care       Date:  2017-06-29       Impact factor: 17.152

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