Skip to main content

Advertisement

SpringerLink
Log in

Psychological Impact of Screening and Prediction in Type 1 Diabetes

  • Published:
Current Diabetes Reports Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Abbreviations

ABIS:

All Babies in Southeast Sweden

DAISY:

Diabetes Autoimmunity Study in the Young

DEW-IT:

Diabetes Evaluation in Washington

DiPiS:

Diabetes Prediction in Skane

DIPP:

Diabetes Prediction and Prevention

KEA:

Key Environmental Aspects of Type 1 Diabetes

MIDIA:

Environmental Triggers of Type 1 Diabetes

PANDA:

Prospective Assessment in Newborns of Diabetes Autoimmunity

TEDDY:

The Environmental Determinants of Diabetes in the Young

References

Papers of particular interest, published recently, have been highlighted as: • Of importance

  1. Schatz D, Krischer J, She JX. To screen or not to screen for pre-type 1 diabetes? Horm Res. 2002;57 suppl 1:12–7.

    Article  PubMed  CAS  Google Scholar 

  2. Diabetes Prevention Trial—Type 1 Diabetes Study Group. Effects of insulin in relatives of patients with type 1 diabetes mellitus. N Engl J Med. 2002;346:1685–91.

    Article  Google Scholar 

  3. Diabetes Prevention Trial—Type 1 Diabetes Study Group. Effects of oral insulin in relatives of patients with type 1 diabetes mellitus. Diabetes Care. 2005;28:1068–76.

    Article  Google Scholar 

  4. Gale EA, Bingley PJ, Emmett CL, Collier T, European Nicotinamide Diabetes Intervention Trial (ENDIT) Group. European Nicotinamide Diabetes Intervention Trial (ENDIT): a randomised controlled trial of intervention before the onset of type 1 diabetes. Lancet. 2004;363:925–31.

    Article  PubMed  CAS  Google Scholar 

  5. TRIGR Study Group, Akerblom HK, Krischer J, Virtanen SM, Berseth C, Becker D, et al. The Trial to Reduce IDDM in the Genetically at Risk (TRIGR) study: recruitment, intervention and follow-up. Diabetologia. 2011;54:627–33.

    Article  PubMed  CAS  Google Scholar 

  6. TEDDY Study Group. The Environmental Determinants in the Young (TEDDY) study: Study design. Pediatr Diabetes. 2007;8:286–98.

    Article  Google Scholar 

  7. Taplin CE, Barker JM. Autoantibodies in type 1 diabetes. Autoimmunity. 2008;41:11–8.

    Article  PubMed  CAS  Google Scholar 

  8. Galesic M, Garcia-Retamero R. Communicating consequences of risky behaviors: life expectancy versus risk of disease. Patient Educ Couns. 2011;82:30–5.

    Article  PubMed  Google Scholar 

  9. Almond B. Genetic profiling of newborns: ethical and social issues. Genetics. 2006;7:67–71.

    PubMed  CAS  Google Scholar 

  10. Ross L. Minimizing risks: the ethics of predictive diabetes mellitus screening research in newborns. Arch Pediatr Adolesc Med. 2003;157:89–95.

    PubMed  Google Scholar 

  11. American Academy of Pediatrics. Ethical issues with genetic testing in pediatrics. Pediatrics. 2001;107:1451–5.

    Article  Google Scholar 

  12. Roth R. Psychological and ethical aspects of prevention trials. J Pediatr Endocrinol Metab. 2001;14:669–74.

    Article  PubMed  Google Scholar 

  13. Johnson SB. Screening programs to identify children at risk for diabetes mellitus: Psychological impact on children and parents. J Pediatr Endocrinol Metab. 2001;14:653–60.

    Article  PubMed  Google Scholar 

  14. Rewers M, Bugawan T, Norris J, Blair A, Beaty B, Hoffman M, et al. Newborn screening for HLA markers associated with IDDM: Diabetes Autoimmunity Study in the Young (DAISY). Diabetologia. 1996;39:807–12.

    Article  PubMed  CAS  Google Scholar 

  15. Wion E, Brantley M, Stevens J, Gallinger S, Peng H, Glass M, et al. Population-wide infant screening for HLA-based type 1 diabetes risk via dried blood spots from the public health infrastructure. Ann N Y Acad Sci. 2003;1005:400–3.

    Article  PubMed  Google Scholar 

  16. Hoppu S, Ronkainen M, Kimpimäki T, Erkkilä S, Korhonen S, Ilonen J, et al. Insulin autoantibody isotypes during the prediabetic process in children with increased genetic risk for type1 diabetes: The Finnish Type 1 Diabetes Prediction and Prevention Study. Pediatr Res. 2004;54:236–42.

    Article  Google Scholar 

  17. Hummel M, Ziegler A, Roth R. Psychological impact of childhood islet autoantibody testing in families participating in the BABYDIAB study. Diabet Med. 2004;21:324–8.

    Article  PubMed  CAS  Google Scholar 

  18. Stolt UG, Helgesson G, Liss P-E, Svensson T, Ludviggson J. Information and informed consent in a longitudinal screening involving children: a questionnaire survey. Eur J Hum Genet. 2005;13:376–83.

    Article  PubMed  Google Scholar 

  19. Lernmark B, Elding-Larsson H, Hansson G, Lindberg B, Lynch K, Sjoblad S. Parent responses to participation in genetic screening for diabetes risk. Pediatr Diabetes. 2004;5:174–81.

    Article  PubMed  Google Scholar 

  20. Kerruish N. Parents’ experiences of newborn screening for genetically susceptibility to type 1 diabetes. J Med Ethics. 2011;37:348–53.

    Article  PubMed  Google Scholar 

  21. • Aas KK, Tambs K, Kise MS, Magnus P, Ronningen KS: Genetic testing of newborns for type 1 susceptibility: a prospective cohort study on effects on maternal mental health. BMC Medical Genetics 2010;11:112. Surveys conducted when the child was 6 months of age found no mental health differences between mothers of children identified as genetically at risk for T1D at birth and mothers of newborns without genetic risk . However, mothers who had T1D themselves reported greater worry.

    Article  PubMed  Google Scholar 

  22. Lernmark B, Johnson SB, Vehik K, Smith L, Ballard L, Baxter J, McLeod W, Roth R, Simell T on behalf of the TEDDY Study Group: Enrollment Experiences in a Pediatric Longitudinal Observational Study: The Environmental Determinants of Diabetes in the Young (TEDDY) Study. Contemporary Clinical Trials 2011, in press.

  23. Johnson SB. Type 1 diabetes risk. In: Tercyak KP, editor. Handbook of genomics and the family: issues in clinical child psychology. New York: Springer; 2010. p. 293–310.

    Google Scholar 

  24. Hendrieckx C, De Smer F, Kristoffersen I, Bradley C. Risk assessment for developing type 1 diabetes: intentions of behavioural changes prior to risk notification. Diabetes Metab Res Rev. 2002;18:36–42.

    Article  PubMed  CAS  Google Scholar 

  25. • Johnson SB, Lee H-S, Baxter J, Lernmark B, Roth R, Simmell T for the TEDDY Study Group: The Environmental Determinants of Diabetes in the Young TEDDY) Study: predictors of early study withdrawal among participants with no family history of type 1 diabetes. Pediatric Diabetes 2011;12:165–171. Mothers who underestimated their child’s risk for T1D at study inception were more likely to leave the study during the first year compared to mothers with accurate risk perceptions. In addition, high anxiety among mothers with accurate risk perceptions was associated with early study withdrawal.

    Article  PubMed  Google Scholar 

  26. Carmichael SK, Johnson SB, Baughcum A, North K, Hopkins D, Dukes MG, et al. Prospective assessment in newborns of diabetes autoimmunity (PANDA): maternal understanding of infant diabetes risk. Genet Med. 2003;5:77–83.

    Article  PubMed  Google Scholar 

  27. Hood K, Johnson SB, Baughcum A, She J, Schatz D. Maternal understanding of infant diabetes risk: differential effects of maternal anxiety and depression. Genet Med. 2006;8:665–70.

    Article  PubMed  Google Scholar 

  28. Johnson SB. Genetic screening for type 1 diabetes: Psychosocial impact on families. In: Miller S, McDaniel S, Rolland J, Feetham S, editors. Individuals, families, and the new era of genetics. New York: Norton; 2006. p. 404–22.

    Google Scholar 

  29. Heshka JT, Palleschi C, Howley H, Wilson B, Wells P. A systematic review of perceived risks, psychological and behavioral impacts of genetic testing. Genet Med. 2008;10:19–32.

    Article  PubMed  Google Scholar 

  30. Johnson SB, Baughcum A, Hood K, Rafkin-Mervis L, Schatz D for the DPT-1 Study group: (2007). Participant and parent experiences in the parenteral insulin arm of the Diabetes Prevention Trial for Type 1 Diabetes. Diabetes Care 2007;30:2193–8.

    Article  PubMed  Google Scholar 

  31. • Johnson SB, Baughcum A, Rafkin-Mervis L, Schatz D for the DPT-1 Study group: Participant and parent experiences in the oral insulin study of the Diabetes Prevention Trial for Type 1 Diabetes. Pediatr Diabetes 2009;30:2193–8. In this randomized trial of oral insulin to prevent T1D in at-risk children and adults, 48% of participants and 38% of parents reported engaging in behaviors outside of the trial to delay or prevent diabetes; change in diet was the most common diabetes prevention behavior reported.

    Google Scholar 

  32. Speilberger C. Manual for the State-Trait Anxiety Inventory STAI (Form Y) 1983. Palo Alto: Consulting Psychologists; 1983.

    Google Scholar 

  33. Speilberger C. Test Manual for the State-Trait Anxiety Inventory for Children 1973. Palo Alto: Consulting Psychologists; 1973.

    Google Scholar 

  34. Speilberger C, Gorsuch R, Lushene R: Test Manual for the State-Trait Anxiety Inventory 1970. Palo Alto, CA: Consulting Psychologists Press.

  35. Johnson SB, Riley W, Hansen C, Nurick M. Psychological impact of islet cell-antibody screening: preliminary results. Diabetes Care. 1990;13:93–7.

    Article  PubMed  CAS  Google Scholar 

  36. Johnson SB, Tercyak K. Psychological impact of islet cell antibody screening for IDDM on children, adults, and their family members. Diabetes Care. 1995;18:1370–2.

    Article  Google Scholar 

  37. Johnson SB, Baughcum A, Carmichael S, She J-X, Schatz D. Maternal anxiety associated with newborn genetic screening for type 1 diabetes. Diabetes Care. 2004;27:392–7.

    Article  Google Scholar 

  38. Carmichael, S: Newborn Genetic Screening for Type I Diabetes: Factors Affecting Maternal Risk Perception, Anxiety and Study Participation. Doctoral Dissertation 2003, University of Florida.

  39. Simonen P, Korhonen T, Simell T, Keskinenk P, Karkkainen M, Knip M, et al. Parental reactions to information about increased genetic risk of type 1 diabetes mellitus in infants. Arch Pediatr Adolesc Med. 2006;160:1131–6.

    Article  PubMed  Google Scholar 

  40. Kerruish N, Campbell-Stokes P, Gray A, Merriman T, Robertson S, Taylor B. Maternal psychological reaction to newborn genetic screening for type 1 diabetes. Pediatrics. 2007;120:e324–35.

    Article  PubMed  Google Scholar 

  41. Johnson SB, Lernmark B, Baxter J, Roth R, Simell T, Mcleod W, and the TEDDY group: At-risk for type 1 diabetes (T1D): Parent anxiety in response to newborn genetic screening results in the Environmental Determinants of Diabetes in the Young (TEDDY) Study. Diabetes 2007, 56 Supplement 1: A498.

  42. Goldstein E, Hermann R, Renfors TJ, Näntö-Salonen KM, Korhonen T, Kärkkäinen M, et al. From genetic risk awareness to overt type 1 diabetes: parental stress in a placebo-controlled prevention trial. Diabetes Care. 2009;32:2181–3.

    Article  PubMed  Google Scholar 

  43. Hood K, Johnson SB, Carmichael S, Laffel L, She J, Schatz D. Depressive in mothers of infants identified as genetically at risk for type 1 diabetes. Diabetes Care. 2005;28:1898–903.

    Article  PubMed  Google Scholar 

  44. Johnson SB, Carmichael S. At-risk for diabetes: coping with the news. J Clin Psychol Med Settings. 2000;7:69–78.

    Article  Google Scholar 

  45. Lucidarme N, Domingues-Muriel E, Castro D, Czernichow P, Levy-Marshall C. Appraisal and implications of predictive testing for insulin-dependent diabetes mellitus. Diabetes Metab. 1998;23:550–3.

    Google Scholar 

  46. Helgesson G, Swarling U. Views on data use, confidentiality and consent in a predictive screening involving children. J Med Ethics. 2008;2008(34):206–9.

    Article  Google Scholar 

  47. Stolt UG, Liss P-E, Ludvigsson J, for the ABIS Study Group. Parents want to know if their child is at high risk of getting diabetes. Ann N Y Acad Sci. 2003;1005:395–9.

    Article  Google Scholar 

  48. Swartling U, Eriksson S, Ludvigsson J, Helgesson G. Concern, pressure and lack of knowledge affect choice of not wanting to know high-risk status. Eur J Hum Genet. 2007;2007(14):556–62.

    Article  Google Scholar 

  49. Baughcum A, Johnson SB, Carmichael S, Lewin A, She J-X, Schatz D. Maternal efforts to prevent type 1 diabetes in at-risk children. Diabetes Care. 2005;28:916–21.

    Article  PubMed  Google Scholar 

Download references

Disclosure

No potential conflict of interest relevant to this article was reported.

Author information

Authors and Affiliations

  1. Department of Medical Humanities and Social Science, Florida State University College of Medicine, 1115 West Call Street, Tallahassee, FL, 32306–4300, USA

    Suzanne Bennett Johnson

Authors
  1. Suzanne Bennett Johnson
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Suzanne Bennett Johnson.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Johnson, S.B. Psychological Impact of Screening and Prediction in Type 1 Diabetes. Curr Diab Rep 11, 454–459 (2011). https://doi.org/10.1007/s11892-011-0208-9

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11892-011-0208-9

Keywords

Search

Navigation