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01-09-2016 | Psychosocial care | Review | Article

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

Journal: Current Diabetes Reports

Authors: Virginia Hagger, Christel Hendrieckx, Jackie Sturt, Timothy C. Skinner, Jane Speight

Publisher: Springer US



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.
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. CrossRef
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
American Psychiatric Association. Diagnostic and statistical manual of mental disorders 5th Edition: DSM-5. Arlington, VA: Author; 2013. DOI: 10.1176/appi.books.9780890425596.807874
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
Reynolds KA, Helgeson VS. Children with diabetes compared to peers: depressed? Distressed? A meta-analytic review. Ann Behav Med. 2011;42(1):29–41. PubMedCentralCrossRefPubMed
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. CrossRef
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. PubMedCentralCrossRefPubMed
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
Markowitz SM, Gonzalez JS, Wilkinson JL, et al. A review of treating depression in diabetes: emerging findings. Psychosomatics. 2011;52(1):1–18. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. CrossRef
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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​. PubMed
Moher D, Liberati A, Tetzlaff J, et al. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. BMJ. 2009;339:b2535. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. CrossRef
Polonsky WH, Anderson BJ, Lohrer PA, et al. Assessment of diabetes-related distress. Diabetes Care. 1995;18(6):754–60. CrossRefPubMed
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. PubMedCentralCrossRefPubMed
Vacha-Haase T, Thompson B. How to estimate and interpret various effect sizes. J Couns Psychol. 2004;51(4):473–81. CrossRef
Cohen, J., Statistical power analysis for the behavioral sciences. 1988: Routledge.
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRef
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. CrossRefPubMed
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. CrossRefPubMed
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.
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.
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. CrossRefPubMed
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. PubMedCentralCrossRefPubMed
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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.
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.
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
Franklin MD. The relationship between psychosocial factors, self-care behaviors, and metabolic control in adolescents with Type 1 Diabetes, 2008, Thesis, Vanderbilt University, TN.
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. CrossRefPubMed
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. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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.
Hood KK, Butler DA, Anderson BJ, et al. Updated and revised diabetes family conflict scale. Diabetes Care. 2007;30(7):1764–9. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
Brewin CR, Bradley C. Patient preferences and randomised clinical trials. BMJ. 1989;299(6694):313–5. PubMedCentralCrossRefPubMed
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. CrossRefPubMed
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. PubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
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. CrossRefPubMed
Fisher L, Glasgow RE, Mullan JT, et al. Development of a brief diabetes distress screening instrument. Ann Fam Med. 2008;6(3):246–52. PubMedCentralCrossRefPubMed
Boardway RH, Delamater AM, Tomakowsky J, et al. Stress management training for adolescents with diabetes. J Pediatr Psychol. 1993;18(1):29–45. CrossRefPubMed
Delamater AM, Smith JA, Lankester L, et al. Stress and metabolic control in diabetic adolescents. 9th Annual Meeting of Behavioral Medicine; 1988; Boston, MA.
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. CrossRefPubMed
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. CrossRefPubMed