Current Diabetes Reports

, 16:9 | Cite as

Diabetes Distress Among Adolescents with Type 1 Diabetes: a Systematic Review

  • Virginia HaggerEmail author
  • Christel Hendrieckx
  • Jackie Sturt
  • Timothy C. Skinner
  • Jane Speight
Psychosocial Aspects (S Jaser and KK Hood, Section Editors)
Part of the following topical collections:
  1. Topical Collection on Psychosocial Aspects


Diabetes distress (DD) refers to the negative emotions arising from living with diabetes and the burden of self-management. Among adults, the prevalence and significance of DD are well established, but this is not the case among adolescents. This systematic review investigated among adolescents with type 1 diabetes: the prevalence of DD; demographic, clinical, behavioral and psychosocial correlates of DD and interventions that reduce DD. Consistent with adult studies, around one third of adolescents experience elevated DD and this is frequently associated with suboptimal glycemic control, low self-efficacy and reduced self-care. Three measures of DD have been developed specifically for adolescents, as those designed for adults may not be sufficiently sensitive to adolescent concerns. Interventions reducing DD in the short term include strategies such as cognitive restructuring, goal setting and problem solving. Further work is needed to investigate sustainability of effect. Rigorous research is needed to progress this field among adolescents.


Adolescent Type 1 diabetes Emotions Psychological stress Distress Review 



VH, JSp, CH and JSt planned the review. VH conducted the search, screened and reviewed studies, extracted and analysed the data and drafted the manuscript. JSp also screened studies, and JSp and CH co-reviewed full-text papers for inclusion and provided substantial contributions to the manuscript. All authors contributed to the search strategy and drafts, and read and approved the final manuscript. The authors did not receive funding to undertake this study.

Compliance with Ethical Standards

Conflict of Interest

Virginia Hagger, Christel Hendrieckx, Jackie Sturt, Timothy Skinner and Jane Speight declare they have no conflict of interest.

Human and Animal Rights and Informed Consent

This manuscript represents the authors’ own work, and the work of others’ is acknowledged appropriately. This article does not contain any studies with human or animal subjects performed by any of the authors. As this study is a review of the published literature, ethical committee approval was not required.

Supplementary material

11892_2015_694_MOESM1_ESM.docx (17 kb)
ESM 1 (DOCX 16.7 kb)


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

  1. 1.
    Esbitt S, Tanenbaum M, Gonzalez JS. Disentangling clinical depression from diabetes-specific distress: making sense of the mess we’ve made. In: Lloyd CE, Hermanns N, Pouwer F, editors. Screening for depression and other psychological problems in diabetes. A practical guide. London: Springer; 2013. p. 27–46.CrossRefGoogle Scholar
  2. 2.
    Pallayova M, Taheri S. Targeting diabetes distress: the missing piece of the successful type 1 diabetes management puzzle. Diabetes Spectr. 2014;27(2):143–9.PubMedCentralCrossRefPubMedGoogle Scholar
  3. 3.
    Polonsky WH, Fisher L, Earles J, et al. Assessing psychosocial distress in diabetes: development of the diabetes distress scale. Diabetes Care. 2005;28(3):626–31.CrossRefPubMedGoogle Scholar
  4. 4.
    American Psychiatric Association. Diagnostic and statistical manual of mental disorders 5th Edition: DSM-5. Arlington, VA: Author; 2013. DOI: 10.1176/appi.books.9780890425596.807874Google Scholar
  5. 5.
    Fisher L, Gonzalez JS, Polonsky WH. The confusing tale of depression and distress in patients with diabetes: a call for greater clarity and precision. Diabet Med. 2014;31(7):764–72. doi: 10.1111/dme.12428.PubMedCentralCrossRefPubMedGoogle Scholar
  6. 6.
    Hood KK, Huestis S, Maher A, et al. Depressive symptoms in children and adolescents with type 1 diabetes: association with diabetes-specific characteristics. Diabetes Care. 2006;29(6):1389–91.CrossRefPubMedGoogle Scholar
  7. 7.
    Reynolds KA, Helgeson VS. Children with diabetes compared to peers: depressed? Distressed? A meta-analytic review. Ann Behav Med. 2011;42(1):29–41.PubMedCentralCrossRefPubMedGoogle Scholar
  8. 8.
    Bernstein CM, Stockwell MS, Gallagher MP, et al. Mental health issues in adolescents and young adults with type 1 diabetes: prevalence and impact on glycemic control. Clin Pediatr. 2013;52(1):10–5.CrossRefGoogle Scholar
  9. 9.
    Helgeson VS, Siminerio L, Escobar O, et al. Predictors of metabolic control among adolescents with diabetes: a 4-year longitudinal study. J Pediatr Psychol. 2009;34(3):254–70.PubMedCentralCrossRefPubMedGoogle Scholar
  10. 10.
    Herzer M, Hood KK. Anxiety symptoms in adolescents with type 1 diabetes: association with blood glucose monitoring and glycemic control. J Pediatr Psychol. 2010;35(4):415–25.PubMedCentralCrossRefPubMedGoogle Scholar
  11. 11.
    Johnson B, Eiser C, Young V, et al. Prevalence of depression among young people with type 1 diabetes: a systematic review. Diabet Med. 2013;30(2):199–208.CrossRefPubMedGoogle Scholar
  12. 12.
    Davidson M, Penney ED, Muller B, et al. M. Stressors and self-care challenges faced by adolescents living with type 1 diabetes. Appl Nurs Res. 2004;17(2):72–80.CrossRefPubMedGoogle Scholar
  13. 13.••
    Sturt J, Dennick K, Due-Christensen M, et al. Detection and management of diabetes distress in type 1 diabetes. Curr Diab Rep. 2015;15(11):101. doi: 10.1007/s11892-015-0660-z. This paper is a recent review of DD among adults with T1D.CrossRefPubMedGoogle Scholar
  14. 14.
    Reddy J, Wilhelm K, Campbell L. Putting PAID to diabetes-related distress: the potential utility of the problem areas in diabetes (PAID) scale in patients with diabetes. Psychosomatics. 2013;54(1):44–51.CrossRefPubMedGoogle Scholar
  15. 15.
    Strandberg RB, Graue M, Wentzel-Larsen T, et al. Relationships of diabetes-specific emotional distress, depression, anxiety, and overall well-being with HbA1c in adult persons with type 1 diabetes. J Psychosom Res. 2014;77(3):174–9.CrossRefPubMedGoogle Scholar
  16. 16.
    Fisher L, Skaff MM, Mullan JT, et al. Clinical depression versus distress among patients with type 2 diabetes: not just a question of semantics. Diabetes Care. 2007;30(3):542–8.CrossRefPubMedGoogle Scholar
  17. 17.
    Georgiades A, Zucker N, Friedman KE, et al. Changes in depressive symptoms and glycemic control in diabetes mellitus. Psychosom Med. 2007;69(3):235–41.CrossRefPubMedGoogle Scholar
  18. 18.
    Markowitz SM, Gonzalez JS, Wilkinson JL, et al. A review of treating depression in diabetes: emerging findings. Psychosomatics. 2011;52(1):1–18.PubMedCentralCrossRefPubMedGoogle Scholar
  19. 19.
    Byrne M, Newell J, Coffey N, et al. Predictors of quality of life gains among people with type 1 diabetes participating in the dose adjustment for normal eating (DAFNE) structured education programme. Diabetes Res Clin Pract. 2012;98(2):243–8.CrossRefPubMedGoogle Scholar
  20. 20.
    Hopkins D, Lawrence I, Mansell P, et al. Improved biomedical and psychological outcomes 1 year after structured education in flexible insulin therapy for people with type 1 diabetes: the U.K. DAFNE experience. Diabetes Care. 2012;35(8):1638–42.PubMedCentralCrossRefPubMedGoogle Scholar
  21. 21.
    Snoek FJ, van der Ven NC, Lubach CH, et al. Effects of cognitive behavioural group training (CBGT) in adult patients with poorly controlled insulin-dependent (type 1) diabetes: a pilot study. Patient Educ Couns. 2001;45(2):143–8.CrossRefPubMedGoogle Scholar
  22. 22.•
    Sturt J, Dennick K, Hessler D, et al. Effective interventions for reducing diabetes distress: systematic review and meta-analysis. Int Diab Nurs. 2015;12(2):40–55. This is the first meta-analysis of effective interventions for reducing DD among adults.CrossRefGoogle Scholar
  23. 23.
    Farrell S, Hains AA, Davies W, et al. The impact of cognitive distortions, stress, and adherence on metabolic control in youths with type 1 diabetes. J Adolesc Health. 2004;34(6):461–7.CrossRefPubMedGoogle Scholar
  24. 24.••
    Weissberg-Benchell J, Antisdel-Lomaglio J. Diabetes-specific emotional distress among adolescents: feasibility, reliability, and validity of the problem areas in diabetes-teen version. Pediatr Diabetes. 2011;12(4):341–4. This paper reports development and psychometric assessment of the PAID-Teen scale, an age-specific measure of DD.CrossRefPubMedGoogle Scholar
  25. 25.
    Ellis D, Frey M, Naar-King S, et al. The effects of multisystemic therapy on diabetes stress among adolescents with chronically poorly controlled type 1 diabetes: findings from a randomized, controlled trial. Pediatrics. 2005;116(6):e826–32.CrossRefPubMedGoogle Scholar
  26. 26.
    Serlachius A, Scratch S, Northam E, et al. A randomized controlled trial of cognitive behaviour therapy to improve glycaemic control and psychosocial wellbeing in adolescents with type 1 diabetes. J Health Psychol. 2014. doi: 10.1177/1359105314547940.PubMedGoogle Scholar
  27. 27.
    Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. BMJ. 2009;339:b2535.PubMedCentralCrossRefPubMedGoogle Scholar
  28. 28.
    Stroup DF, Berlin JA, Morton SC, et al. Meta-analysis of observational studies in epidemiology: a proposal for reporting. JAMA. 2000;283(15):2008–12.CrossRefPubMedGoogle Scholar
  29. 29.
    DCCT Research Group. Effect of intensive diabetes treatment on the development and progression of long-term complications in adolescents with insulin-dependent diabetes mellitus: diabetes control and complications Trial. J Pediatr. 1994;125:177–88.CrossRefGoogle Scholar
  30. 30.
    Polonsky WH, Anderson BJ, Lohrer PA, et al. Assessment of diabetes-related distress. Diabetes Care. 1995;18(6):754–60.CrossRefPubMedGoogle Scholar
  31. 31.
    Downs SH, Black N. The feasibility of creating a checklist for the assessment of the methodological quality both of randomised and non-randomised studies of health care interventions. J Epidemiol Community Health. 1998;52(6):377–84.PubMedCentralCrossRefPubMedGoogle Scholar
  32. 32.
    Vacha-Haase T, Thompson B. How to estimate and interpret various effect sizes. J Couns Psychol. 2004;51(4):473–81.CrossRefGoogle Scholar
  33. 33.
    Cohen, J., Statistical power analysis for the behavioral sciences. 1988: Routledge.Google Scholar
  34. 34.
    Hains AA, Davies WH, Parton E, et al. A stress management intervention for adolescents with type I diabetes. Diabetes Educ. 2000;26(3):417–24.CrossRefPubMedGoogle Scholar
  35. 35.
    Hains AA, Davies WH, Parton E, et al. Brief report: a cognitive behavioral intervention for distressed adolescents with type I diabetes. J Pediatr Psychol. 2001;26(1):61–6.CrossRefPubMedGoogle Scholar
  36. 36.
    Silverman AH, Hains AA, Davies WH, et al. A cognitive behavioral adherence intervention for adolescents with type 1 diabetes. J Clin Psychol Med Settings. 2003;10(2):119–27.CrossRefGoogle Scholar
  37. 37.
    Salamon KS, Hains AA, Fleischman KM, et al. Improving adherence in social situations for adolescents with type 1 diabetes mellitus (T1DM): a pilot study. Prim Care Diabetes. 2010;4(1):47–55.CrossRefPubMedGoogle Scholar
  38. 38.
    Murphy HR, Wadham C, Rayman G, et al. Approaches to integrating paediatric diabetes care and structured education: experiences from the families, adolescents, and children’s teamwork study (FACTS). Diabet Med. 2007;24(11):1261–8.CrossRefPubMedGoogle Scholar
  39. 39.
    Brierley S, Johnson B, Young V, et al. The importance of measuring diabetes distress in young people with type 1 diabetes. In diabetes UK professional conference 2012. Glasgow Scotland. Diabet Med. 2012;29(Suppl1):59.Google Scholar
  40. 40.
    Young V, Johnson B, Brierley S, et al. Using a diabetes-specific measure to predict disordered eating in adolescents with type 1 diabetes. EHPS 2013 Abstracts. Psychol Health. 2013;28 Suppl 1:1–335.Google Scholar
  41. 41.
    Gregory J, Robling M, Bennert K, et al. Development and evaluation by a cluster randomised trial of a psychosocial intervention in children and teenagers experiencing diabetes: the DEPICTED study. Health Technol Assess. 2011;15(29):1–202.CrossRefPubMedGoogle Scholar
  42. 42.
    McNamara R, Robling M, Hood K, et al. Development and evaluation of a psychosocial intervention for children and teenagers experiencing diabetes (DEPICTED): a protocol for a cluster randomised controlled trial of the effectiveness of a communication skills training programme for healthcare professionals working with young people with type 1 diabetes. BMC Health Serv Res. 2010;10:36–36.PubMedCentralCrossRefPubMedGoogle Scholar
  43. 43.
    Robling M, McNamara R, Bennert K, et al. The effect of the talking diabetes consulting skills intervention on glycaemic control and quality of life in children with type 1 diabetes: cluster randomised controlled trial (DEPICTED study). BMJ. 2012;344:e2359–e2359.PubMedCentralCrossRefPubMedGoogle Scholar
  44. 44.
    Hains AA, Berlin KS, Davies H, et al. Attributions of adolescents with type 1 diabetes related to performing diabetes care around friends and peers: the moderating role of friend support. J Pediatr Psychol. 2007;32(5):561–70.CrossRefPubMedGoogle Scholar
  45. 45.
    Hains AA, Berlin KS, Davies WH, et al. Attributions of teacher reactions to diabetes self-care behaviors. J Pediatr Psychol. 2009;34(1):97–107.CrossRefPubMedGoogle Scholar
  46. 46.
    Farrell, S. The impact of stress, adherence, and cognitive errors on metabolic control in youths with type I diabetes, 2000, Thesis, University of Wisconsin, MKE.Google Scholar
  47. 47.
    Serlachius, A., The best of coping: a randomised trial to improve glycaemic control and psychosocial wellbeing in adolescents with type 1 diabetes, 2011. Thesis, The University of Melbourne.Google Scholar
  48. 48.
    Boland EA, Grey M, Mezger J, et al. A summer vacation from diabetes: evidence from a clinical trial. Diabetes Educ. 1999;25(1):31–40.CrossRefPubMedGoogle Scholar
  49. 49.
    Boland EA, Grey M, Oesterle A, et al. Continuous subcutaneous insulin infusion: a new way to lower risk of severe hypoglycemia, improve metabolic control, and enhance coping in adolescents with type 1 diabetes. Diabetes Care. 1999;22(11):1779–84.CrossRefPubMedGoogle Scholar
  50. 50.
    Grey M, Boland EA, Davidson M, et al. Coping skills training for youth with diabetes mellitus has long-lasting effects on metabolic control and quality of life. J Pediatr. 2000;137(1):107–13.CrossRefPubMedGoogle Scholar
  51. 51.
    Grey M, Boland EA, Davidson M, et al. Short-term effects of coping skills training as adjunct to intensive therapy in adolescents. Diabetes Care. 1998;21(6):902–8.CrossRefPubMedGoogle Scholar
  52. 52.
    Grey M, Boland EA, Davidson M, et al. Coping skills training for youths with diabetes on intensive therapy. Appl Nurs Res. 1999;12(1):3–12.CrossRefPubMedGoogle Scholar
  53. 53.
    Grey M, Boland EA, Tamborlane WV. Use of lispro insulin and quality of life in adolescents on intensive therapy. Diabetes Educ. 1999;25(6):934–41.CrossRefPubMedGoogle Scholar
  54. 54.
    Grey M, Boland EA, Yu C, et al. Personal and family factors associated with quality of life in adolescents with diabetes. Diabetes Care. 1998;21(6):909–14.CrossRefPubMedGoogle Scholar
  55. 55.
    Berlin KS, Rabideau EM, Hains AA. Empirically derived patterns of perceived stress among youth with type 1 diabetes and relationships to metabolic control. J Pediatr Psychol. 2012;37(9):990–8.CrossRefPubMedGoogle Scholar
  56. 56.••
    Delamater AM, Patiño-Fernández AM, Smith KE, et al. Measurement of diabetes stress in older children and adolescents with type 1 diabetes mellitus. Pediatr Diabetes. 2013;14(1):50–6. This study reports the psychometric properties and factor analysis for the DSQY scale, an age-specific measure of DD.CrossRefPubMedGoogle Scholar
  57. 57.
    Franklin MD. The relationship between psychosocial factors, self-care behaviors, and metabolic control in adolescents with Type 1 Diabetes, 2008, Thesis, Vanderbilt University, TN.Google Scholar
  58. 58.
    Hains AA, Berlin KS, Davies WH, et al. Attributions of adolescents with type 1 diabetes in social situations: relationship with expected adherence, diabetes stress, and metabolic control. Diabetes Care. 2006;29(4):818–22.CrossRefPubMedGoogle Scholar
  59. 59.
    Wagner JA. Response shift and glycemic control in children with diabetes. Health Qual Life Outcomes. 2005;3(1):38. doi: 10.1186/1477-7525-3-38.PubMedCentralCrossRefPubMedGoogle Scholar
  60. 60.
    Law GU, Walsh J, Queralt V, et al. Adolescent and parent diabetes distress in type 1 diabetes: the role of self-efficacy, perceived consequences, family responsibility and adolescent-parent discrepancies. J Psychosom Res. 2013;74(4):334–9.CrossRefPubMedGoogle Scholar
  61. 61.
    Nouwen A, Law GU, Hussain S, et al. Comparison of the role of self-efficacy and illness representations in relation to dietary self-care and diabetes distress in adolescents with type 1 diabetes. Psychol Health. 2009;24(9):1071–84.CrossRefPubMedGoogle Scholar
  62. 62.
    Lerman-Garber I, Barrón-Uribe C, Calzada-León R, et al. Emotional dysfunction associated with diabetes in Mexican adolescents and young adults with type-1 diabetes. Salud Publica de Mexico. 2003;45(1):13–8.CrossRefPubMedGoogle Scholar
  63. 63.
    Singh E, Farruggia SP, Peterson ER. Adolescents with diabetes: support from healthcare teams and families. Int J Adolesc Med Health. 2013;25(1):91–6.CrossRefPubMedGoogle Scholar
  64. 64.
    Speight J, Browne JL, Holmes-Truscott E, et al, on behalf of the Diabetes MILES – Australia reference group. Diabetes MILES—Australia 2011 Survey Report. Diabetes Australia—Vic, Melbourne. 2011.Google Scholar
  65. 65.
    Hood KK, Butler DA, Anderson BJ, et al. Updated and revised diabetes family conflict scale. Diabetes Care. 2007;30(7):1764–9.CrossRefPubMedGoogle Scholar
  66. 66.
    Williams LB, Laffel LMB, Hood KK. Diabetes-specific family conflict and psychological distress in paediatric type 1 diabetes. Diabet Med. 2009;26(9):908–14.CrossRefPubMedGoogle Scholar
  67. 67.
    Van Bastelaar KMP, Pouwer F, Geelhoed-Duijvestijn PHLM, et al. Diabetes-specific emotional distress mediates the association between depressive symptoms and glycaemic control in type 1 and type 2 diabetes. Diabet Med. 2010;27(7):798–803.CrossRefPubMedGoogle Scholar
  68. 68.
    Twenge JM, Nolen-Hoeksema S. Age, gender, race, socioeconomic status, and birth cohort difference on the children’s depression inventory: a meta-analysis. J Abnorm Psychol. 2002;111(4):578.CrossRefPubMedGoogle Scholar
  69. 69.
    Kibbey K, Speight J, Wong J, et al. Diabetes care provision: barriers, enablers and service needs of young adults with type 1 diabetes from a region of social disadvantage. Diabetic Med. 2013;30(7):878–84.CrossRefPubMedGoogle Scholar
  70. 70.
    Brewin CR, Bradley C. Patient preferences and randomised clinical trials. BMJ. 1989;299(6694):313–5.PubMedCentralCrossRefPubMedGoogle Scholar
  71. 71.
    Murphy HR, Rayman G, Skinner TC. Psycho-educational interventions for children and young people with type 1 diabetes. Diabet Med. 2006;23(9):935–43.CrossRefPubMedGoogle Scholar
  72. 72.
    Hermanns N, Schmitt A, Gahr A, et al. The effect of a diabetes-specific cognitive behavioral treatment program (DIAMOS) for patients with diabetes and subclinical depression: results of a randomized controlled trial. Diabetes Care. 2015;38(4):551–60.PubMedGoogle Scholar
  73. 73.
    Ellis D, Templin T, Naar-King S, et al. Multisystemic therapy for adolescents with poorly controlled type I diabetes: stability of treatment effects in a randomized controlled trial. J Consult Clin Psychol. 2007;75(1):168–74.CrossRefPubMedGoogle Scholar
  74. 74.
    Gage H, Hampson S, Skinner TC, et al. Educational and psychosocial programmes for adolescents with diabetes: approaches, outcomes and cost-effectiveness. Patient Educ Couns. 2004;53(3):333–46.CrossRefPubMedGoogle Scholar
  75. 75.
    Hampson SE, Skinner TC, Hart J, et al. Behavioral interventions for adolescents with type 1 diabetes: how effective are they? Diabetes Care. 2000;23(9):1416–22.CrossRefPubMedGoogle Scholar
  76. 76.
    Hendrieckx C, Halliday JA, Bowden JP, et al. Severe hypoglycaemia and its association with psychological well-being in Australian adults with type 1 diabetes attending specialist tertiary clinics. Diabetes Res Clin Pract. 2014;103(3):430–6.CrossRefPubMedGoogle Scholar
  77. 77.
    Fisher L, Glasgow RE, Mullan JT, et al. Development of a brief diabetes distress screening instrument. Ann Fam Med. 2008;6(3):246–52.PubMedCentralCrossRefPubMedGoogle Scholar
  78. 78.
    Boardway RH, Delamater AM, Tomakowsky J, et al. Stress management training for adolescents with diabetes. J Pediatr Psychol. 1993;18(1):29–45.CrossRefPubMedGoogle Scholar
  79. 79.
    Delamater AM, Smith JA, Lankester L, et al. Stress and metabolic control in diabetic adolescents. 9th Annual Meeting of Behavioral Medicine; 1988; Boston, MA.Google Scholar
  80. 80.
    Kovacs M, Brent D, Steinberg T, et al. Children’s self-reports of psychologic adjustment and coping strategies during first year of insulin-dependent diabetes mellitus. Diabetes Care. 1986;9(5):472–9.CrossRefPubMedGoogle Scholar
  81. 81.
    Welch GW, Jacobson AM, Polonsky WH. The problem areas in diabetes scale. An evaluation of its clinical utility. Diabetes Care. 1997;20(5):760–6.CrossRefPubMedGoogle Scholar

Copyright information

© Springer Science+Business Media New York 2016

Authors and Affiliations

  • Virginia Hagger
    • 1
    • 2
    Email author
  • Christel Hendrieckx
    • 1
    • 2
  • Jackie Sturt
    • 3
  • Timothy C. Skinner
    • 4
  • Jane Speight
    • 1
    • 2
    • 5
  1. 1.The Australian Centre for Behavioural Research in DiabetesDiabetes VictoriaMelbourneAustralia
  2. 2.Centre for Social and Early Emotional Development, School of PsychologyDeakin UniversityBurwoodAustralia
  3. 3.Florence Nightingale Faculty of Nursing and MidwiferyKing’s College LondonLondonUK
  4. 4.School of Psychological and Clinical SciencesCharles Darwin UniversityNorthern TerritoryAustralia
  5. 5.AHP ResearchHornchurchUK

Personalised recommendations