Skip to main content
SpringerLink
Log in

Distress and Quality of Life

  • Chapter
  • First Online:
Behavioral Diabetes

Abstract

For past few decades, health professionals have been trying to understand the mechanism and nature of diabetes distress and quality of life. This chapter is devoted to address this underlying mechanism. A comprehensive review of empirical and theoretical literature is presented wherein the correlates of both distress and quality of life are addressed. The cyclic nature of diabetes distress and quality of life is investigated starting from diagnosis to outcomes of various types of intervention plans. Research findings indicate that among children and adolescents with diabetes, distress faced at the time of diagnosis is associated with the changes in lifestyle, adjustment to the complex treatment regimen, and the development of complications associated with diabetes. Other than diagnosis, factors like changes in the treatment regimen, change of doctor, onset of a complication, and change in healthcare plan are commonly associated with diabetes distress. The review also incorporates demographic and psychosocial correlates. We describe a comprehensive conceptual model of care addressing the role of empirically investigated correlates of diabetes distress and quality of life in children and adolescents with type 1 and type 2 diabetes. It is recommended that tailored interventions addressing any of the common correlates of distress and quality of life should be carefully evaluated and prioritized based on their commonality in the underlying mechanisms of distress and quality of life. Considering the model of care, directions for future research are presented.

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

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 169.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 219.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 219.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Aalto, A. M., Uutela, A., & Aro, A. R. (1997). Health related quality of life among insulin-dependent diabetics: Disease-related and psychosocial correlates. Patient Education and Counseling, 30(3), 215–225.

    Article  PubMed  Google Scholar 

  • Abdul-Rasoul, M., AlOtaibi, F., Abdulla, A., Rahme, Z., & AlShawaf, F. (2013). Quality of life of children and adolescents with type 1 diabetes in Kuwait. Medical Principles and Practice, 22(4), 379–384. https://doi.org/10.1159/000347052

    Article  PubMed  PubMed Central  Google Scholar 

  • Achuko, O., Walker, R. J., Campbell, J. A., Dawson, A. Z., & Egede, L. E. (2016). Pathways between discrimination and quality of life in patients with type 2 diabetes. Diabetes Technology and Therapeutics, 18(3), 151–158. https://doi.org/10.1089/dia.2015.0305

    Article  PubMed  PubMed Central  Google Scholar 

  • Allan, C. L., Flett, B., & Dean, H. J. (2008). Quality of life in first nation youth with type 2 diabetes. Maternal and Child Health Journal, 12(Suppl 1), 103–109. https://doi.org/10.1007/s10995-008-0365-x

    Article  PubMed  Google Scholar 

  • Alva, M., Gray, A., Mihaylova, B., & Clarke, P. (2014). The effect of diabetes complications on health-related quality of life: The importance of longitudinal data to address patient heterogeneity. Health Economics, 23(4), 487–500. https://doi.org/10.1002/hec.2930

    Article  PubMed  Google Scholar 

  • Anderson, B. J., Holmbeck, G., Iannotti, R. J., McKay, S. V., Lochrie, A., Volkening, L. K., & Laffel, L. (2009). Dyadic measures of the parent-child relationship during the transition to adolescence and glycemic control in children with type 1 diabetes. Families, Systems & Health, 27(2), 141–152. https://doi.org/10.1037/a0015759

    Article  Google Scholar 

  • Anderson, R. M., Fitzgerald, J. T., Wisdom, K., Davis, W. K., & Hiss, R. G. (1997). A comparison of global versus disease-specific quality-of-life measures in patients with NIDDM. Diabetes Care, 20(3), 299–305.

    Article  PubMed  Google Scholar 

  • Ausili, E., Tabacco, F., Focarelli, B., Padua, L., Crea, F., Caliandro, P., … Rendeli, C. (2007). Multidimensional study on quality of life in children with type 1 diabetes. European Review for Medical and Pharmacological Sciences, 11(4), 249–255.

    PubMed  Google Scholar 

  • Auslander, W. F., Bubb, J., Rogge, M., & Santiago, J. V. (1993). Family stress and resources: Potential areas of intervention in children recently diagnosed with diabetes. Health and Social Work, 18(2), 101–113.

    Article  PubMed  Google Scholar 

  • Badescu, S. V., Tataru, C., Kobylinska, L., Georgescu, E. L., Zahiu, D. M., Zagrean, A. M., & Zagrean, L. (2016). The association between diabetes mellitus and depression. Journal of Medicine and Life, 9(2), 120–125.

    PubMed  PubMed Central  Google Scholar 

  • Baker, F., & Intagliata, J. (1982). Quality of life in the evaluation of community support systems. Evaluation and Program Planning, 5(1), 69–79.

    Article  PubMed  Google Scholar 

  • Baucom, K. J., Queen, T. L., Wiebe, D. J., Turner, S. L., Wolfe, K. L., Godbey, E. I., … Berg, C. A. (2015). Depressive symptoms, daily stress, and adherence in late adolescents with type 1 diabetes. Health Psychology, 34(5), 522–530. https://doi.org/10.1037/hea0000219

    Article  PubMed  PubMed Central  Google Scholar 

  • Beck, J., Lewis, T., Harrison, D., Sternlof, S., Comp, C., & Copeland, K. (2012). Use of the mastery of stress instrument in caregivers of children newly diagnosed with type 1 diabetes: Identifying a need for further intervention. The Diabetes Educator, 38(2), 280–288. https://doi.org/10.1177/0145721711436133

    Article  PubMed  Google Scholar 

  • Boyer, J. G., & Earp, J. A. (1997). The development of an instrument for assessing the quality of life of people with diabetes. Diabetes-39. Medical Care, 35(5), 440–453.

    Article  PubMed  Google Scholar 

  • Buresova, G., Veleminsky, M., Jr., & Veleminsky, M., Sr. (2008). Health related quality of life of children and adolescents with type 1 diabetes. Neuro Endocrinology Letters, 29(6), 1045–1053.

    PubMed  Google Scholar 

  • Burton, N. W., Pakenham, K. I., & Brown, W. J. (2010). Feasibility and effectiveness of psychosocial resilience training: A pilot study of the READY program. Psychology, Health and Medicine, 15(3), 266–277. https://doi.org/10.1080/13548501003758710

    Article  PubMed  Google Scholar 

  • Butner, J., Berg, C. A., Osborn, P., Butler, J. M., Godri, C., Fortenberry, K. T., … Wiebe, D. J. (2009). Parent-adolescent discrepancies in adolescents’ competence and the balance of adolescent autonomy and adolescent and parent well-being in the context of type 1 diabetes. Devlopmental Psychology, 45(3), 835–849. https://doi.org/10.1037/a0015363

    Article  Google Scholar 

  • Byrne, M., Newell, J., Coffey, N., O’Hara, M. C., Cooke, D., & Dinneen, S. F. (2012). 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 Research and Clinical Practice, 98(2), 243–248. https://doi.org/10.1016/j.diabres.2012.09.017

    Article  PubMed  Google Scholar 

  • Chaney, J. M., Mullins, L. L., Frank, R. G., Peterson, L., Mace, L. D., Kashani, J. H., & Goldstein, D. L. (1997). Transactional patterns of child, mother, and father adjustment in insulin-dependent diabetes mellitus: A prospective study. Journal of Pediatric Psychology, 22(2), 229–244.

    Article  PubMed  Google Scholar 

  • Chaplin, J. E., Hanas, R., Lind, A., Tollig, H., Wramner, N., & Lindblad, B. (2009). Assessment of childhood diabetes-related quality-of-life in West Sweden. Acta Paediatrica, 98(2), 361–366. https://doi.org/10.1111/j.1651-2227.2008.01066.x

    Article  PubMed  Google Scholar 

  • Chew, B. H., Sherina, M. S., & Hassan, N. H. (2015). Association of diabetes-related distress, depression, medication adherence, and health-related quality of life with glycated hemoglobin, blood pressure, and lipids in adult patients with type 2 diabetes: A cross-sectional study. Therapeutics and Clinical Risk Management, 11, 669–681. https://doi.org/10.2147/TCRM.S81623

    Article  PubMed  PubMed Central  Google Scholar 

  • Cho, Y. H., Craig, M. E., & Donaghue, K. C. (2014). Puberty as an accelerator for diabetes complications. Pediatric Diabetes, 15(1), 18–26. https://doi.org/10.1111/pedi.12112

    Article  PubMed  Google Scholar 

  • Choe, M. A., Padilla, G. V., Chae, Y. R., & Kim, S. (2001). Quality of life for patients with diabetes in Korea--I: The meaning of health-related quality of life. International Journal of Nursing Studies, 38(6), 673–682.

    Article  PubMed  Google Scholar 

  • Cunningham, N. R., Vesco, A. T., Dolan, L. M., & Hood, K. K. (2011). From caregiver psychological distress to adolescent glycemic control: The mediating role of perceived burden around diabetes management. Journal of Pediatric Psychology, 36(2), 196–205. https://doi.org/10.1093/jpepsy/jsq071

    Article  PubMed  Google Scholar 

  • Dashiff, C. J. (2003). Self-and dependent-care responsibility of adolescents with IDDM and their parents. Journal of Family Nursing, 9(2), 166–183.

    Article  Google Scholar 

  • DCCT. (1988). Reliability and validity of a diabetes quality-of-life measure for the diabetes control and complications trial (DCCT). Diabetes Care, 11(9), 725–732.

    Article  Google Scholar 

  • de Vries, L., van der Heijden, A. A., van’t Riet, E., Baan, C. A., Kostense, P. J., Rijken, M., … Nijpels, G. (2014). Peer support to decrease diabetes-related distress in patients with type 2 diabetes mellitus: design of a randomised controlled trial. BMC Endocrine Disorders, 14, 21. https://doi.org/10.1186/1472-6823-14-21

    Article  PubMed  PubMed Central  Google Scholar 

  • Delamater, A. M., de Witt, M., McDarby, V., Malik, J., Acerini, C. L., International Society for, P, & Adolescent, D. (2014). ISPAD Clinical Practice Consensus Guidelines 2014. Psychological care of children and adolescents with type 1 diabetes. Pediatric Diabetes, 15(Suppl 20), 232–244. https://doi.org/10.1111/pedi.12191

    Article  PubMed  Google Scholar 

  • Delamater, A. M., Kurtz, S. M., Bubb, J., White, N. H., & Santiago, J. V. (1987). Stress and coping in relation to metabolic control of adolescents with type 1 diabetes. Journal of Developmental and Behavioral Pediatrics, 8(3), 136-140.

    Article  Google Scholar 

  • Delamater, A. M., Patino-Fernandez, A. M., Smith, K. E., & Bubb, J. (2013). Measurement of diabetes stress in older children and adolescents with type 1 diabetes mellitus. Pediatric Diabetes, 14(1), 50–56. https://doi.org/10.1111/j.1399-5448.2012.00894.x

    Article  PubMed  Google Scholar 

  • Ditesheim, J. A., & Templeton, J. M., Jr. (1987). Short-term v long-term quality of life in children following repair of high imperforate anus. Journal of Pediatric Surgery, 22(7), 581–587.

    Article  PubMed  Google Scholar 

  • Eckert, K. (2012). Impact of physical activity and bodyweight on health-related quality of life in people with type 2 diabetes. Diabetes, Metabolic Syndrome and Obesity, 5, 303–311. https://doi.org/10.2147/DMSO.S34835

    Article  PubMed  PubMed Central  Google Scholar 

  • Eckshtain, D., Ellis, D. A., Kolmodin, K., & Naar-King, S. (2010). The effects of parental depression and parenting practices on depressive symptoms and metabolic control in urban youth with insulin dependent diabetes. Journal of Pediatric Psychology, 35(4), 426–435. https://doi.org/10.1093/jpepsy/jsp068

    Article  PubMed  Google Scholar 

  • Edelman, D., Olsen, M. K., Dudley, T. K., Harris, A. C., & Oddone, E. Z. (2002). Impact of diabetes screening on quality of life. Diabetes Care, 25(6), 1022–1026.

    Article  PubMed  Google Scholar 

  • Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood: Core research. Health Technology Assessment, 5, 1–157.

    Article  PubMed  Google Scholar 

  • Farrell, S. P., Hains, A. A., Davies, W. H., Smith, P., & Parton, E. (2004). The impact of cognitive distortions, stress, and adherence on metabolic control in youths with type 1 diabetes. Journal of Adolescent Health, 34(6), 461–467. https://doi.org/10.1016/S1054-139X(03)00215-5

    Article  Google Scholar 

  • Felce, D., & Perry, J. (1995). Quality of life: Its definition and measurement. Research in Developmental Disabilities, 16(1), 51–74.

    Article  PubMed  Google Scholar 

  • Forsander, G., Bogelund, M., Haas, J., & Samuelsson, U. (2016). Adolescent life with diabetes-gender matters for level of distress. Experiences from the national TODS study. Pediatric Diabetes., 18, 651. https://doi.org/10.1111/pedi.12478

    Article  PubMed  Google Scholar 

  • Froisland, D. H., Graue, M., Markestad, T., Skrivarhaug, T., Wentzel-Larsen, T., & Dahl-Jorgensen, K. (2013). Health-related quality of life among Norwegian children and adolescents with type 1 diabetes on intensive insulin treatment: A population-based study. Acta Paediatrica, 102(9), 889–895. https://doi.org/10.1111/apa.12312

    Article  PubMed  Google Scholar 

  • Fukuda, H., & Mizobe, M. (2017). Impact of nonadherence on complication risks and healthcare costs in patients newly-diagnosed with diabetes. Diabetes Research and Clinical Practice, 123, 55–62. https://doi.org/10.1016/j.diabres.2016.11.007

    Article  PubMed  Google Scholar 

  • Gibson, T. B., Song, X., Alemayehu, B., Wang, S. S., Waddell, J. L., Bouchard, J. R., & Forma, F. (2010). Cost sharing, adherence, and health outcomes in patients with diabetes. American Journal of Managed Care, 16(8), 589–600.

    Google Scholar 

  • Glasgow, R. E., Ruggiero, L., Eakin, E. G., Dryfoos, J., & Chobanian, L. (1997). Quality of life and associated characteristics in a large national sample of adults with diabetes. Diabetes Care, 20(4), 562–567.

    Article  PubMed  Google Scholar 

  • Goh, S. G., Rusli, B. N., & Khalid, B. A. (2015). Diabetes quality of life perception in a multiethnic population. Quality of Life Research, 24(7), 1677–1686. https://doi.org/10.1007/s11136-014-0885-3

    Article  PubMed  Google Scholar 

  • Graue, M., Wentzel-Larsen, T., Bru, E., Hanestad, B. R., & Sovik, O. (2004). The coping styles of adolescents with type 1 diabetes are associated with degree of metabolic control. Diabetes Care, 27(6), 1313–1317.

    Article  PubMed  Google Scholar 

  • Gredig, D., & Bartelsen-Raemy, A. (2016). Diabetes-related stigma affects the quality of life of people living with diabetes mellitus in Switzerland: Implications for healthcare providers. Health and Social Care in the Community., 25, 1620. https://doi.org/10.1111/hsc.12376

    Article  PubMed  Google Scholar 

  • Greening, L., Stoppelbein, L., & Cheek, K. (2016). Racial/ethnic disparities in the risk of posttraumatic stress disorder symptoms among mothers of children diagnosed with cancer and type-1 diabetes mellitus. Psychological Trauma: Theory, Research, Practice, and Policy., 9, 325. https://doi.org/10.1037/tra0000230

    Article  Google Scholar 

  • Group, T. S., Wilfley, D., Berkowitz, R., Goebel-Fabbri, A., Hirst, K., Ievers-Landis, C., … Van Buren, D. (2011). Binge eating, mood, and quality of life in youth with type 2 diabetes: Baseline data from the today study. Diabetes Care, 34(4), 858–860. https://doi.org/10.2337/dc10-1704

    Article  Google Scholar 

  • Hahl, J., Hamalainen, H., Sintonen, H., Simell, T., Arinen, S., & Simell, O. (2002). Health-related quality of life in type 1 diabetes without or with symptoms of long-term complications. Quality of Life Research, 11(5), 427–436.

    Article  PubMed  Google Scholar 

  • Hains, A. A., Berlin, K. S., Davies, W. H., Parton, E. A., & Alemzadeh, R. (2006). Attributions of adolescents with type 1 diabetes in social situations: Relationship with expected adherence, diabetes stress, and metabolic control. Diabetes Care, 29(4), 818–822.

    Article  PubMed  Google Scholar 

  • Hanberger, L., Ludvigsson, J., & Nordfeldt, S. (2009). Health-related quality of life in intensively treated young patients with type 1 diabetes. Pediatric Diabetes, 10(6), 374–381. https://doi.org/10.1111/j.1399-5448.2008.00496.x

    Article  PubMed  Google Scholar 

  • Hannonen, R., Eklund, K., Tolvanen, A., Komulainen, J., Riikonen, R., Delamater, A. M., & Ahonen, T. (2015). Psychological distress of children with early-onset type 1 diabetes and their mothers’ well-being. Acta Paediatrica, 104(11), 1144–1149. https://doi.org/10.1111/apa.13144

    Article  PubMed  Google Scholar 

  • Hanson, C. L., Henggeler, S. W., & Burghen, G. A. (1987). Social competence and parental support as mediators of the link between stress and metabolic control in adolescents with insulin-dependent diabetes mellitus. Journal of Consulting and Clinical Psychology, 55(4), 529–533.

    Article  PubMed  Google Scholar 

  • Hapunda, G., Abubakar, A., van de Vijver, F., & Pouwer, F. (2015). Living with type 1 diabetes is challenging for Zambian adolescents: Qualitative data on stress, coping with stress and quality of care and life. BMC Endocrine Disorders, 15, 20. https://doi.org/10.1186/s12902-015-0013-6

    Article  PubMed  PubMed Central  Google Scholar 

  • Hassan, K., Loar, R., Anderson, B. J., & Heptulla, R. A. (2006). The role of socioeconomic status, depression, quality of life, and glycemic control in type 1 diabetes mellitus. Journal of Pediatrics, 149(4), 526–531. https://doi.org/10.1016/j.jpeds.2006.05.039

    Article  Google Scholar 

  • Haugstvedt, A., Wentzel-Larsen, T., Graue, M., Sovik, O., & Rokne, B. (2010). Fear of hypoglycaemia in mothers and fathers of children with type 1 diabetes is associated with poor glycaemic control and parental emotional distress: A population-based study. Diabetic Medicine, 27(1), 72–78. https://doi.org/10.1111/j.1464-5491.2009.02867.x

    Article  PubMed  Google Scholar 

  • Haugstvedt, A., Wentzel-Larsen, T., Rokne, B., & Graue, M. (2011). Perceived family burden and emotional distress: Similarities and differences between mothers and fathers of children with type 1 diabetes in a population-based study. Pediatric Diabetes, 12(2), 107–114. https://doi.org/10.1111/j.1399-5448.2010.00661.x

    Article  PubMed  Google Scholar 

  • Hayes, A., Arima, H., Woodward, M., Chalmers, J., Poulter, N., Hamet, P., & Clarke, P. (2016). Changes in quality of life associated with complications of diabetes: Results from the ADVANCE study. Value in Health, 19(1), 36–41. https://doi.org/10.1016/j.jval.2015.10.010

    Article  PubMed  Google Scholar 

  • Helgeson, V. S., Becker, D., Escobar, O., & Siminerio, L. (2012). Families with children with diabetes: Implications of parent stress for parent and child health. Journal of Pediatric Psychology, 37(4), 467–478. https://doi.org/10.1093/jpepsy/jsr110

    Article  PubMed  PubMed Central  Google Scholar 

  • Herbert, L. J., Clary, L., Owen, V., Monaghan, M., Alvarez, V., & Streisand, R. (2015). Relations among school/daycare functioning, fear of hypoglycaemia and quality of life in parents of young children with type 1 diabetes. Journal of Clinical Nursing, 24(9–10), 1199–1209. https://doi.org/10.1111/jocn.12658

    Article  PubMed  Google Scholar 

  • Hilliard, M. E., Herzer, M., Dolan, L. M., & Hood, K. K. (2011). Psychological screening in adolescents with type 1 diabetes predicts outcomes one year later. Diabetes Research and Clinical Practice, 94(1), 39–44. https://doi.org/10.1016/j.diabres.2011.05.027

    Article  PubMed  PubMed Central  Google Scholar 

  • Hilliard, M. E., Monaghan, M., Cogen, F. R., & Streisand, R. (2011). Parent stress and child behaviour among young children with type 1 diabetes. Child: Care, Health and Development, 37(2), 224–232. https://doi.org/10.1111/j.1365-2214.2010.01162.x

    Article  Google Scholar 

  • Hlatky, M. A., Chung, S. C., Escobedo, J., Hillegass, W. B., Melsop, K., Rogers, W., … Group, B. D. S. (2010). The effect of obesity on quality of life in patients with diabetes and coronary artery disease. American Heart Journal, 159(2), 292–300. https://doi.org/10.1016/j.ahj.2009.11.004

    Article  PubMed  Google Scholar 

  • Hochhauser, C. J., Rapaport, R., Shemesh, E., Schmeidler, J., & Chemtob, C. M. (2008). Age at diagnosis, gender, and metabolic control in children with type 1 diabetes. Pediatric Diabetes, 9(4 Pt 1), 303–307. https://doi.org/10.1111/j.1399-5448.2008.00395.x

    Article  PubMed  Google Scholar 

  • Huston, S. A., Blount, R. L., Heidesch, T., & Southwood, R. (2016). Resilience, emotion processing and emotion expression among youth with type 1 diabetes. Pediatric Diabetes, 17(8), 623–631. https://doi.org/10.1111/pedi.12347

    Article  PubMed  Google Scholar 

  • Jacobson, A. M., Braffett, B. H., Cleary, P. A., Gubitosi-Klug, R. A., Larkin, M. E., & Group, B. D. S. (2013). The long-term effects of type 1 diabetes treatment and complications on health-related quality of life: A 23-year follow-up of the diabetes control and complications/epidemiology of diabetes interventions and complications cohort. Diabetes Care, 36(10), 3131–3138. https://doi.org/10.2337/dc12-2109

    Article  PubMed  PubMed Central  Google Scholar 

  • Jaser, S. S., Linsky, R., & Grey, M. (2014). Coping and psychological distress in mothers of adolescents with type 1 diabetes. Maternal and Child Health Journal, 18(1), 101–108. https://doi.org/10.1007/s10995-013-1239-4

    Article  PubMed  Google Scholar 

  • Jaser, S. S., Patel, N., Xu, M., Tamborlane, W. V., & Grey, M. (2017). Stress and coping predicts adjustment and glycemic control in adolescents with type 1 diabetes. Annals of Behavioral Medicine, 51(1), 30–38. https://doi.org/10.1007/s12160-016-9825-5

    Article  PubMed  Google Scholar 

  • Jhita, T., Petrou, S., Gumber, A., Szczepura, A., Raymond, N. T., & Bellary, S. (2014). Ethnic differences in health related quality of life for patients with type 2 diabetes. Health and Quality of Life Outcomes, 12, 83. https://doi.org/10.1186/1477-7525-12-83

    Article  PubMed  PubMed Central  Google Scholar 

  • Joensen, L. E., Almdal, T. P., & Willaing, I. (2016). Associations between patient characteristics, social relations, diabetes management, quality of life, glycaemic control and emotional burden in type 1 diabetes. Primary Care Diabetes, 10(1), 41–50. https://doi.org/10.1016/j.pcd.2015.06.007

    Article  PubMed  Google Scholar 

  • Kaholokula, J. K., Haynes, S. N., Grandinetti, A., & Chang, H. K. (2006). Ethnic differences in the relationship between depressive symptoms and health-related quality of life in people with type 2 diabetes. Ethnicity and Health, 11(1), 59–80. https://doi.org/10.1080/13557850500391287

    Article  PubMed  Google Scholar 

  • Kalyva, E., Abdul-Rasoul, M., Kehl, D., Barkai, L., & Lukacs, A. (2016). A cross-cultural study on perceived health-related quality of life in children and adolescents with type 1 diabetes mellitus. Journal of Diabetes and its Complications, 30(3), 482–487. https://doi.org/10.1016/j.jdiacomp.2015.12.021

    Article  PubMed  Google Scholar 

  • Keller, M., Attia, R., Beltrand, J., Djadi-Prat, J., Nguyen-Khoa, T., Jay, J. P., … Robert, J. J. (2016). Insulin regimens, diabetes knowledge, quality of life, and HbA1c in children and adolescents with type 1 diabetes. Pediatric Diabetes., 18, 340. https://doi.org/10.1111/pedi.12397

    Article  PubMed  Google Scholar 

  • Klein, B. E., Klein, R., & Moss, S. E. (1998). Self-rated health and diabetes of long duration. The Wisconsin epidemiologic study of diabetic retinopathy. Diabetes Care, 21(2), 236–240.

    Article  PubMed  Google Scholar 

  • Kong, L., Cai, Y., Mei, G., Gu, R., Zhang, X., Qin, Y., … Yang, T. (2013). Psychological status and diabetes-related distress of Chinese type 1 diabetes patients in Jiangsu province, China. Journal of Biomedical Research, 27(5), 380–385. https://doi.org/10.7555/JBR.27.20120112

    Article  PubMed  PubMed Central  Google Scholar 

  • Landolt, M. A., Ribi, K., Laimbacher, J., Vollrath, M., Gnehm, H. E., & Sennhauser, F. H. (2002). Posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. Journal of Pediatric Psychology, 27(7), 647–652.

    Article  PubMed  Google Scholar 

  • Landolt, M. A., Vollrath, M., Laimbacher, J., Gnehm, H. E., & Sennhauser, F. H. (2005). Prospective study of posttraumatic stress disorder in parents of children with newly diagnosed type 1 diabetes. Journal of the American Academy of Child and Adolescent Psychiatry, 44(7), 682–689. https://doi.org/10.1097/01.chi.0000161645.98022.35

    Article  PubMed  Google Scholar 

  • Larson, R. W., Moneta, G., Richards, M. H., & Wilson, S. (2002). Continuity, stability, and change in daily emotional experience across adolescence. Child Development, 73(4), 1151–1165.

    Article  PubMed  Google Scholar 

  • Law, G. U., Walsh, J., Queralt, V., & Nouwen, A. (2013). Adolescent and parent diabetes distress in type 1 diabetes: The role of self-efficacy, perceived consequences, family responsibility and adolescent-parent discrepancies. Journal of Psychosomatic Research, 74(4), 334–339. https://doi.org/10.1016/j.jpsychores.2012.12.009

    Article  PubMed  Google Scholar 

  • Lemes Dos Santos, P. F., Dos Santos, P. R., Ferrari, G. S., Fonseca, G. A., & Ferrari, C. K. (2014). Knowledge of diabetes mellitus: Does gender make a difference? Osong Public Health and Research Perspectives, 5(4), 199–203. https://doi.org/10.1016/j.phrp.2014.06.004

    Article  PubMed  PubMed Central  Google Scholar 

  • Lewis, K. S., Bradley, C., Knight, G., Boulton, A. J., & Ward, J. D. (1988). A measure of treatment satisfaction designed specifically for people with insulin-dependent diabetes. Diabetic Medicine, 5(3), 235–242.

    Article  PubMed  Google Scholar 

  • Liu, B.-C. (1976). Quality of life indicators in US metropolitan areas. New York, NY: Praeger.

    Google Scholar 

  • Lovibond, P. F., & Lovibond, S. H. (1995). The structure of negative emotional states: Comparison of the depression anxiety stress scales (DASS) with the Beck depression and anxiety inventories. Behaviour Research and Therapy, 33(3), 335–343.

    Article  PubMed  Google Scholar 

  • Luyckx, K., Seiffge-Krenke, I., & Hampson, S. E. (2010). Glycemic control, coping, and internalizing and externalizing symptoms in adolescents with type 1 diabetes: A cross-lagged longitudinal approach. Diabetes Care, 33(7), 1424–1429. https://doi.org/10.2337/dc09-2017

    Article  PubMed  PubMed Central  Google Scholar 

  • Malik, J. A., Batool, A., & Nawaz, A. (2016). Feedback loop between diabetes management and quality of life: A synthesis of direct and indirect effects. Pakistan Journal of Medical Research, 55(4), 103.

    Google Scholar 

  • Malik, J. A., & Koot, H. M. (2009). Explaining the adjustment of adolescents with type 1 diabetes: Role of diabetes-specific and psychosocial factors. Diabetes Care, 32(5), 774–779. https://doi.org/10.2337/dc08-1306

    Article  PubMed  PubMed Central  Google Scholar 

  • Malik, J. A., & Koot, H. M. (2011). Assessing diabetes support in adolescents: Factor structure of the modified diabetes social support questionnaire (M-DSSQ-family). Pediatric Diabetes, 12(3 Pt 2), 258–265. https://doi.org/10.1111/j.1399-5448.2010.00691.x

    Article  PubMed  Google Scholar 

  • Malik, J. A., & Koot, H. M. (2012). Assessing diabetes support in adolescents: Factor structure of the modified diabetes social support questionnaire (DSSQ-friends). Diabetic Medicine, 29(8), e232–e240. https://doi.org/10.1111/j.1464-5491.2012.03677.x

    Article  PubMed  Google Scholar 

  • Mumtaz, T., Haider, S. A., Malik, J. A., & La Greca, A. M. (2016). Translation, validation and effectiveness of self-care inventory in assessing adherence to diabetes treatment. Journal of Pakistan Medical Association, 66(7), 853–858.

    Google Scholar 

  • Murillo, M., Bel, J., Perez, J., Corripio, R., Carreras, G., Herrero, X., … Rajmil, L. (2017). Health-related quality of life (HRQOL) and its associated factors in children with type 1 diabetes mellitus (T1DM). BMC Pediatrics, 17(1), 16. https://doi.org/10.1186/s12887-017-0788-x

    Article  PubMed  PubMed Central  Google Scholar 

  • Narasingarao, M. R., Manda, R., Sridhar, G. R., Madhu, K., & Rao, A. A. (2009). A clinical decision support system using multilayer perceptron neural network to assess well being in diabetes. The Journal of the Association of Physicians of India, 57, 127–133.

    PubMed  Google Scholar 

  • Nieuwesteeg, A., Hartman, E., Emons, W., van Bakel, H., Aanstoot, H. J., van Mil, E., & Pouwer, F. (2016). Paediatric parenting stress in fathers and mothers of young children with type 1 diabetes: A longitudinal study. Diabetic Medicine., 34, 821. https://doi.org/10.1111/dme.13300

    Article  Google Scholar 

  • Northam, E., Anderson, P., Adler, R., Werther, G., & Warne, G. (1996). Psychosocial and family functioning in children with insulin-dependent diabetes at diagnosis and one year later. Journal of Pediatric Psychology, 21(5), 699–717.

    Article  PubMed  Google Scholar 

  • Peasgood, T., Brennan, A., Mansell, P., Elliott, J., Basarir, H., & Kruger, J. (2016). The impact of diabetes-related complications on preference-based measures of health-related quality of life in adults with type I diabetes. Medical Decision Making, 36(8), 1020–1033. https://doi.org/10.1177/0272989X16658660

    Article  PubMed  PubMed Central  Google Scholar 

  • Peyrot, M., & Rubin, R. R. (1997). Levels and risks of depression and anxiety symptomatology among diabetic adults. Diabetes Care, 20(4), 585–590.

    Article  PubMed  Google Scholar 

  • Pisula, E., & Czaplinska, C. (2010). Coping with stress in adolescents with type 1 diabetes and their mothers. European Journal of Medical Research, 15(Suppl 2), 115–119.

    Article  PubMed  PubMed Central  Google Scholar 

  • Polonsky, W. H., Anderson, B. J., Lohrer, P. A., Welch, G., Jacobson, A. M., Aponte, J. E., & Schwartz, C. E. (1995). Assessment of diabetes-related distress. Diabetes Care, 18(6), 754–760.

    Article  PubMed  Google Scholar 

  • Pomerantz, E. M., & Eaton, M. M. (2001). Maternal intrusive support in the academic context: Transactional socialization processes. Developmental Psychology, 37(2), 174–186.

    Article  PubMed  Google Scholar 

  • Puri, K., Sapra, S., & Jain, V. (2013). Emotional, behavioral and cognitive profile, and quality of life of Indian children and adolescents with type 1 diabetes. Indian Journal of Endocrinology and Metabolism, 17(6), 1078–1083. https://doi.org/10.4103/2230-8210.122631

    Article  PubMed  PubMed Central  Google Scholar 

  • Rao, U., Hammen, C. L., & Poland, R. E. (2010). Longitudinal course of adolescent depression: Neuroendocrine and psychosocial predictors. Journal of the American Academy of Child and Adolescent Psychiatry, 49(2), 141–151.

    PubMed  PubMed Central  Google Scholar 

  • Rausch, J. R., Hood, K. K., Delamater, A., Shroff Pendley, J., Rohan, J. M., Reeves, G., … Drotar, D. (2012). Changes in treatment adherence and glycemic control during the transition to adolescence in type 1 diabetes. Diabetes Care, 35(6), 1219–1224. https://doi.org/10.2337/dc11-2163

    Article  PubMed  PubMed Central  Google Scholar 

  • Rose, M., Burkert, U., Scholler, G., Schirop, T., Danzer, G., & Klapp, B. F. (1998). Determinants of the quality of life of patients with diabetes under intensified insulin therapy. Diabetes Care, 21(11), 1876–1885.

    Article  PubMed  Google Scholar 

  • Rubin, R. R., & Peyrot, M. (1999). Quality of life and diabetes. Diabetes/Metabolism Research and Reviews, 15(3), 205–218.

    Article  PubMed  Google Scholar 

  • Samuelsson, U., Anderzen, J., Gudbjornsdottir, S., Steineck, I., Akesson, K., & Hanberger, L. (2016). Teenage girls with type 1 diabetes have poorer metabolic control than boys and face more complications in early adulthood. Journal of Diabetes and its Complications, 30(5), 917–922. https://doi.org/10.1016/j.jdiacomp.2016.02.007

    Article  PubMed  Google Scholar 

  • Schilling, L. S., Knafl, K. A., & Grey, M. (2006). Changing patterns of self-management in youth with type I diabetes. Journal of Pediatric Nursing, 21(6), 412–424. https://doi.org/10.1016/j.pedn.2006.01.034

    Article  PubMed  Google Scholar 

  • Schram, M. T., Baan, C. A., & Pouwer, F. (2009). Depression and quality of life in patients with diabetes: A systematic review from the European depression in diabetes (EDID) research consortium. Current Diabetes Reviews, 5(2), 112–119.

    Article  PubMed  PubMed Central  Google Scholar 

  • Shakya-Vaidya, S., Povlsen, L., Shrestha, B., Grjibovski, A. M., & Krettek, A. (2014). Understanding and living with glaucoma and non-communicable diseases like hypertension and diabetes in the Jhaukhel-Duwakot health demographic surveillance site: A qualitative study from Nepal. Global Health Action, 7, 25358. https://doi.org/10.3402/gha.v7.25358

    Article  PubMed  Google Scholar 

  • Shallcross, A. J., Ojie, M. J., Chaplin, W., Levy, N., Odedosu, T., Ogedegbe, G., & Spruill, T. M. (2015). Race/ethnicity moderates the relationship between chronic life stress and quality of life in type 2 diabetes. Diabetes Research and Clinical Practice, 108(1), 150–156. https://doi.org/10.1016/j.diabres.2015.01.025

    Article  PubMed  PubMed Central  Google Scholar 

  • Shiu, A. T., Choi, K. C., Lee, D. T., Yu, D. S., & Man Ng, W. (2014). Application of a health-related quality of life conceptual model in community-dwelling older Chinese people with diabetes to understand the relationships among clinical and psychological outcomes. Journal of Diabetes Investigation, 5(6), 677–686. https://doi.org/10.1111/jdi.12198

    Article  PubMed  PubMed Central  Google Scholar 

  • Shivashankar, R., Bhalla, S., Kondal, D., Ali, M. K., Prabhakaran, D., Narayan, K. M., & Tandon, N. (2016). Adherence to diabetes care processes at general practices in the National Capital Region-Delhi, India. Indian Journal of Endocrinology and Metabolism, 20(3), 329–336. https://doi.org/10.4103/2230-8210.180000

    Article  PubMed  PubMed Central  Google Scholar 

  • Simpson, S. H., Lin, M., & Eurich, D. T. (2016). Medication adherence affects risk of new diabetes complications: A cohort study. Annals of Pharmacotherapy, 50(9), 741–746. https://doi.org/10.1177/1060028016653609

    Article  Google Scholar 

  • Sismanlar, S. G., Demirbas-Cakir, E., Karakaya, I., Cizmecioglu, F., Yavuz, C. I., Hatun, S., & Agaoglu, B. (2012). Posttraumatic stress symptoms in children diagnosed with type 1 diabetes. Italian Journal of Pediatrics, 38, 13. https://doi.org/10.1186/1824-7288-38-13

    Article  PubMed  PubMed Central  Google Scholar 

  • Sloan, F. A., Bethel, M. A., Lee, P. P., Brown, D. S., & Feinglos, M. N. (2004). Adherence to guidelines and its effects on hospitalizations with complications of type 2 diabetes. The Review of Diabetic Studies, 1(1), 29–38. https://doi.org/10.1900/RDS.2004.1.29

    Article  PubMed  PubMed Central  Google Scholar 

  • Solli, O., Stavem, K., & Kristiansen, I. S. (2010). Health-related quality of life in diabetes: The associations of complications with EQ-5D scores. Health and Quality of Life Outcomes, 8, 18. https://doi.org/10.1186/1477-7525-8-18

    Article  PubMed  PubMed Central  Google Scholar 

  • Song, M. S., & Kim, H. S. (2009). Intensive management program to improve glycosylated hemoglobin levels and adherence to diet in patients with type 2 diabetes. Applied Nursing Research, 22(1), 42–47. https://doi.org/10.1016/j.apnr.2007.05.004

    Article  PubMed  Google Scholar 

  • Sparring, V., Nystrom, L., Wahlstrom, R., Jonsson, P. M., Ostman, J., & Burstrom, K. (2013). Diabetes duration and health-related quality of life in individuals with onset of diabetes in the age group 15-34 years - a Swedish population-based study using EQ-5D. BMC Public Health, 13, 377. https://doi.org/10.1186/1471-2458-13-377

    Article  PubMed  PubMed Central  Google Scholar 

  • Stallwood, L. (2005). Influence of caregiver stress and coping on glycemic control of young children with diabetes. Journal of Pediatrics Health Care, 19(5), 293–300. https://doi.org/10.1016/j.pedhc.2005.04.003

    Article  Google Scholar 

  • Streisand, R., Mackey, E. R., & Herge, W. (2010). Associations of parent coping, stress, and well-being in mothers of children with diabetes: Examination of data from a national sample. Maternal and Child Health Journal, 14(4), 612–617. https://doi.org/10.1007/s10995-009-0497-7

    Article  PubMed  Google Scholar 

  • Streisand, R., Swift, E., Wickmark, T., Chen, R., & Holmes, C. S. (2005). Pediatric parenting stress among parents of children with type 1 diabetes: The role of self-efficacy, responsibility, and fear. Journal of Pediatric Psychology, 30(6), 513–521. https://doi.org/10.1093/jpepsy/jsi076

    Article  PubMed  Google Scholar 

  • Sud, S., Marcon, M., Assor, E., Daneman, D., & Mahmud, F. H. (2012). Quality of life in children with diabetes and celiac disease: Minimal impact of the ‘double diagnosis’. Pediatric Diabetes, 13(2), 163–169. https://doi.org/10.1111/j.1399-5448.2011.00785.x

    Article  PubMed  Google Scholar 

  • Sundberg, F., Forsander, G., Fasth, A., & Ekelund, U. (2012). Children younger than 7 years with type 1 diabetes are less physically active than healthy controls. Acta Paediatrica, 101(11), 1164–1169. https://doi.org/10.1111/j.1651-2227.2012.02803.x

    Article  PubMed  Google Scholar 

  • Tahirovic, H., Toromanovic, A., Tahirovic, E., & Begic, H. (2013). Impact of socioeconomic status on health-related quality of life in children with type 1 diabetes mellitus in Bosnia and Herzegovina. Minerva Pediatrica, 65(2), 207–212.

    PubMed  Google Scholar 

  • Tahirovic, H., Toromanovic, A., Tahirovic, E., Begic, H., & Varni, J. W. (2012). Health-related quality of life and metabolic control in children with type 1 diabetes mellitus in Bosnia and Herzegovina. Collegium Antropologicum, 36(1), 117–121.

    Article  PubMed  Google Scholar 

  • Testa, M. A., & Simonson, D. C. (1996). Assessment of quality-of-life outcomes. The New England Journal of Medicine, 334(13), 835–840. https://doi.org/10.1056/NEJM199603283341306

    Article  PubMed  Google Scholar 

  • Testa, M. A., & Simonson, D. C. (1998). Health Economicsomic benefits and quality of life during improved glycemic control in patients with type 2 diabetes mellitus: A randomized, controlled, double-blind trial. JAMA, 280(17), 1490–1496.

    Article  PubMed  Google Scholar 

  • Tran, V., Wiebe, D. J., Fortenberry, K. T., Butler, J. M., & Berg, C. A. (2011). Benefit finding, affective reactions to diabetes stress, and diabetes management among early adolescents. Health Psychology, 30(2), 212–219. https://doi.org/10.1037/a0022378

    Article  PubMed  PubMed Central  Google Scholar 

  • Varni, J. W., Delamater, A. M., Hood, K. K., Raymond, J. K., Chang, N. T., Driscoll, K. A., … Wilson, D. P. (2018). PedsQL 3.2 diabetes module for children, adolescents, and young adults: Reliability and validity in type 1 diabetes. Diabetes Care, 41, 2064–2071.

    Article  PubMed  PubMed Central  Google Scholar 

  • Viaene, A. S., Van Daele, T., Bleys, D., Faust, K., & Massa, G. G. (2017). Fear of hypoglycemia, parenting stress, and metabolic control for children with type 1 diabetes and their parents. Journal of Clinical Psychology in Medical Settings, 24(1), 74–81. https://doi.org/10.1007/s10880-017-9489-8

    Article  PubMed  Google Scholar 

  • Wagner, J. A., Abbott, G., & Lett, S. (2004). Age related differences in individual quality of life domains in youth with type 1 diabetes. Health and Quality of Life Outcomes, 2, 54. https://doi.org/10.1186/1477-7525-2-54

    Article  PubMed  PubMed Central  Google Scholar 

  • Wagner, V. M., Muller-Godeffroy, E., von Sengbusch, S., Hager, S., & Thyen, U. (2005). Age, metabolic control and type of insulin regime influences health-related quality of life in children and adolescents with type 1 diabetes mellitus. European Journal of Pediatrics, 164(8), 491–496. https://doi.org/10.1007/s00431-005-1681-4

    Article  PubMed  Google Scholar 

  • Walker, R. J., Lynch, C. P., Strom Williams, J., Voronca, D., & Egede, L. E. (2015). Meaning of illness and quality of life in patients with type 2 diabetes. Journal of Diabetes and its Complications, 29(5), 665–669. https://doi.org/10.1016/j.jdiacomp.2015.04.006

    Article  PubMed  Google Scholar 

  • Wee, H. L., Li, S. C., Cheung, Y. B., Fong, K. Y., & Thumboo, J. (2006). The influence of ethnicity on health-related quality of life in diabetes mellitus: A population-based, multiethnic study. Journal of Diabetes and its Complications, 20(3), 170–178. https://doi.org/10.1016/j.jdiacomp.2005.06.010

    Article  PubMed  Google Scholar 

  • Weinberger, M., Kirkman, M. S., Samsa, G. P., Cowper, P. A., Shortliffe, E. A., Simel, D. L., & Feussner, J. R. (1994). The relationship between glycemic control and health-related quality of life in patients with non-insulin-dependent diabetes mellitus. Medical Care, 32(12), 1173–1181.

    Article  PubMed  Google Scholar 

  • Weinger, K., & Jacobson, A. M. (2001). Psychosocial and quality of life correlates of glycemic control during intensive treatment of type 1 diabetes. Patient Education and Counseling, 42(2), 123–131.

    Article  PubMed  Google Scholar 

  • Wiebe, D. J., Berg, C. A., Korbel, C., Palmer, D. L., Beveridge, R. M., Upchurch, R., … Donaldson, D. L. (2005). Children’s appraisals of maternal involvement in coping with diabetes: Enhancing our understanding of adherence, metabolic control, and quality of life across adolescence. Journal of Pediatric Psychology, 30(2), 167–178.

    Article  PubMed  Google Scholar 

  • Yi, J. P., Vitaliano, P. P., Smith, R. E., Yi, J. C., & Weinger, K. (2008). The role of resilience on psychological adjustment and physical health in patients with diabetes. British Journal of Health Psychology, 13(Pt 2), 311–325. https://doi.org/10.1348/135910707X186994

    Article  PubMed  Google Scholar 

  • Yi-Frazier, J. P., Smith, R. E., Vitaliano, P. P., Yi, J. C., Mai, S., Hillman, M., & Weinger, K. (2010). A person-focused analysis of resilience resources and coping in diabetes patients. Stress and Health, 26(1), 51–60.

    Article  PubMed  PubMed Central  Google Scholar 

  • Yi-Frazier, J. P., Yaptangco, M., Semana, S., Buscaino, E., Thompson, V., Cochrane, K., … Rosenberg, A. R. (2015). The association of personal resilience with stress, coping, and diabetes outcomes in adolescents with type 1 diabetes: Variable- and person-focused approaches. Journal of Health Psychology, 20(9), 1196–1206. https://doi.org/10.1177/1359105313509846

    Article  PubMed  Google Scholar 

  • Yu, A. P., Yu, Y. F., & Nichol, M. B. (2010). Estimating the effect of medication adherence on health outcomes among patients with type 2 diabetes--an application of marginal structural models. Value in Health, 13(8), 1038–1045. https://doi.org/10.1111/j.1524-4733.2010.00787.x

    Article  PubMed  Google Scholar 

  • Zhu, Y., Fish, A. F., Li, F., Liu, L., & Lou, Q. (2016). Psychosocial factors not metabolic control impact the quality of life among patients with type 2 diabetes in China. Acta Diabetologica, 53(4), 535–541. https://doi.org/10.1007/s00592-015-0832-y

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. National Institute of Psychology, Quaid-i-Azam University, Islamabad, Pakistan

    Jamil A. Malik & Naeem Aslam

Authors
  1. Jamil A. Malik
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Naeem Aslam
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Jamil A. Malik .

Editor information

Editors and Affiliations

  1. Department of Pediatrics, University of Miami Miller School of Medicine, Miami, FL, USA

    Alan M. Delamater

  2. Center for Border Health Disparities, University of Arizona, Tuscon, AZ, USA

    David G. Marrero

Rights and permissions

Reprints and permissions

Copyright information

© 2020 Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Malik, J.A., Aslam, N. (2020). Distress and Quality of Life. In: Delamater, A., Marrero, D. (eds) Behavioral Diabetes. Springer, Cham. https://doi.org/10.1007/978-3-030-33286-0_4

Download citation

Publish with us

Policies and ethics

Search

Navigation