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The Complex Burden of Autoimmune Type 1 Diabetes

Author : Sanofi
Editorial Team

People who develop autoimmune Type 1 Diabetes (T1D) face a lifelong, multi-facetted burden that is both physical and psychological.

If the person who is diagnosed is a child or adolescent, this burden often affects the child’s entire family, as well as the child’s social relations such as daycare, school, and friends.

The burden of autoimmune T1D spans aspects related to the natural course of the condition, incl. how it progresses, how it is managed, and how it may cause complications. How autoimmune T1D progresses is generally determined by factors like HbA1c, Time in Range, and glucose variability, which in turn are determined by adequate administration of insulin and adherence to diet and exercise guidelines.1

The burden also has psychological aspects – from the impact of discovering a risk of developing autoimmune T1D, to the emotional toll of receiving a diagnosis, to the mental effects of daily management of a chronic condition, and to the potential impact of complications on the future of the individual.

BURDEN article

DKA: diabetic ketoacidosis
Illustration produced by Sanofi based on references a-i:
a. Rawshani A et al. (2018) Lancet. 392, pp.477-86; b. Duca LM, et al. Diabetes Care. 2017;40(9):1249-55; c. Shrivastava SR et al. (2013) J Diabetes Metab Disord. 1214; d. Hammersen J et al. (2022) Pediatr Diabetes 22(3), pp.455-62; e. Aye T et al. (2019) Diabetes Care. 42(3), pp.443-9; f. Butwicka A, et al. (2015) Diabetes Care 38, 453-9; g. Fleming M et al. (2019) Diabetes Care. 42(9), pp.1700-7; h. Nielsen HB et al. (2016) Diabetes Res Clin Pract. 121, pp.62-8; i. Dehn-Hindenberg A et al. (2021) Diabetes Care. 44(12), pp.2656-63.

The Physical Burden of Autoimmune T1D & the Persistent Risk of Complications

BURDEN article

Many people experience that being diagnosed with autoimmune T1D has a profound negative impact on the life of the individual and their entire family.2-8

Despite advances in care and management of this chronic condition, autoimmune T1D continues to be associated with substantial medical burden, led by persistent risks of complications that may arise from blood glucose levels being out of range, incl.: 4-7, 9-16

 

  • Hypoglycemia
     
  • Retinopathy
     
  • Neuropathy
     
  • Nephropathy
     
  • Increased risk of cardiovascular disease
     
  • Sub-clinical brain alterations and detrimental neurocognitive outcomes
     
  • Potentially life-threatening diabetic ketoacidosis (DKA)
     
  • Increased morbidity and mortality
acute and long-term consequences of aT1D

a. Frier BM (2014) Nat Rev Endocrinol, 10711-22; b. Seaquist ER et al. (2013) Diabetes Care, 36,pp.1384-1395; c. Cryer PE (2012) Diabetes Care, 35,pp.1814-1816; d. Khunti K et al. (2015) Diabetes Care, 38(2),pp.316-322.

Among the first complications that may arise for people who develop autoimmune T1D is diabetic ketoacidosis (DKA) – a potentially life-threatening condition that often requires hospitalization.11, 17

DKA prevention is considered to be important, because even DKA episodes that are not immediately life-threatening can have long-term effects. DKA at diagnosis of autoimmune T1D presents an acute complication, and DKA can lead to acute kidney injury or may negatively impact cognitive development of children and adolescents.11-13, 18, 19

Studies have found that whereas incidences of severe hypoglycemia have declined over the last years, the rate of DKA in people diagnosed with autoimmune T1D remains stable.12

Challenges in Daily Self-Management of Autoimmune T1D

BURDEN article

Psychosocial Impact of Autoimmune T1D

BURDEN article

As autoimmune T1D is a mentally demanding condition, psychosocial challenges affect people who live with the condition considerably more than such challenges affect the general population.20

At any time, up to 40% of individuals living with the autoimmune T1D are affected by diabetes-related distress,20 which refers to the emotional burden and stress resulting from the ongoing demands of managing diabetes daily.28

A study of self-reported survey data found that people experienced several types of emotional distress as part of the psychosocial burden of living with diabetes (autoimmune T1D or Type 2 Diabetes):20

Image Kelly distress forms

Graph reproduced by Sanofi based Kelly RC, et al. (2023) (Fig. 1)20

* The ‘Other’ responses in this study refer to the 14% of self-reporting people with diabetes who experienced a psychosocial burden from feelings of anger, PTSD, disordered eating, fear of high blood sugars, marriage problems, mental fatigue, burnout/feeling overwhelmed/hopelessness, and suicidal thoughts.20

Family Impact of a Child Receiving an Autoimmune T1D Diagnosis

BURDEN article
mental health disorders - children and adoles

*Data shown are from 1302 children aged <16 years who were enrolled in the Western Australia Childhood Diabetes Database.
†In individuals with autoimmune T1D, in addition to anorexia nervosa or bulimia nervosa, insulin omission or restriction may be used as an additional means of weight control.d
a. Cooper MN et al (2017) Pediatric Diabetes,18(7),pp.599-606; b. Butwicka A, et al. (2015) Diabetes Care 38, 453-9. c. Dybdal D et al. (2018) Diabetologia, 61(4),pp.831-838; d. Hanlan ME, et al. Curr Diab Rep. 2013:10.1007/s11892-013-0418-4. e. Butwicka A, et al. (2016) Psychosomatics, 57(2),pp.185-93.

Can Early Detection of Diabetes-Specific Islet Autoantibodies Lessen the Burden of Autoimmune T1D?

BURDEN article

It stands to reason that the burden of autoimmune T1D is both complex and persistent.

People affected by the condition face a myriad of challenges in learning how to achieve blood glucose levels according to guidelines and in minimizing the effects and complications associated with beta cells loss.

The steepness of the learning curve and the short- and long-term success in managing the condition might be determined by how people come to discover that they are living autoimmune T1D.2, 42

Studies that focus on early detection of individuals who are progressing through the pre-symptomatic Stages 1 and 2 of autoimmune T1D have found the potential benefits of early detection to be:

 

  • Reduced risk of experiencing diabetic ketoacidosis (DKA) at the time of diagnosis, which is conventionally when an individual has progressed to Stage 3 autoimmune T1D where symptoms may onset and more severe complications may arise.16
     
  • Improved health-related quality of life; higher degree of preparedness among children and their parents if a child is screened prior to being diagnosed at Stage 3; and lower parenting stress post-diagnosis compared to children diagnosed without screening.2
     
  • Milder clinical presentation in children who participate in education and monitoring after early-stage diagnosis.42

Depending on the results, people who test positive for diabetes-specific islet autoantibodies (IAb+) may experience emotional reactions such as shock, grief, guilt, anger, depression, and anxiety, as those who are IAb+ discover that they have a higher risk of developing Stage 3 autoimmune T1D.2, 16, 43

Early detection studies such as BABYDIAB, TEDDY, Fr1da, and DiPiS highlight the psychological impact of islet autoantibody screening.16,44,45 One study has raised the discussion point that first-degree relatives (FDRs) show higher anxiety levels than non-FDRs up to 5 years after testing IAb+. This is potentially due to FDRs having firsthand experience with what it entails to manage of autoimmune T1D and thus having more accurate risk perception than parents from the general population.45

However, when it is related to anxiety or depression in parents whose children have tested IAb+, researchers agree that the psychological impact decreases over time.16, 44

BURDEN article

Seemingly, early detection through testing for diabetes-specific islet autoantibodies presents a dilemma between the value of knowing the risk of developing autoimmune T1D versus the psychological impact of worrying about potential risks.

Researchers who have reviewed the same studies that have found that IAb+ tests may cause psychological challenges also point out that there are clear benefits to screening for autoimmune T1D, and that autoimmune T1D screening programs in the general population are emerging worldwide. The potential benefits from early detection through screening include: 2, 16, 42, 46, 47

 

  • Knowledge that allows people to adjust to the diagnosis progressively and time to process and prepare for the prospect that oneself or a loved one will likely develop autoimmune T1D.
     
  • Knowledge of the increased risk for developing autoimmune T1D, which likely decreases how surprised and overwhelmed people feel at potential symptom onset.
     
  • Knowledge and skills (e.g. for metabolic monitoring), which may enable them to have lower rates of DKA and reduced HbA1c when progressing to stage 3 of autoimmune T1D.
     
  • Higher degree of diabetes-specific quality of life across the first year following diagnosis.
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  1. El Malahi A et al. (2022) J Clin Endocrinol Metab. 18, 107(2), e570-e581, PMID-34534297

  2. Smith LB et al. (2018) Pediatr Diabetes. 19(5) 1025-1033

  3. Wolfsdorf et al. (2009) - Pediatric Diabetes, vol. 10(Suppl. 12) 118–133

  4. Birkebaek NH et al. (2022) Lancet Diabetes Endocrinol. 10(11) 786‐794

  5. Duca LM, et al. (2017) Diabetes Care. 40(9) 1249-1255

  6. Glaser N et al. (2022) ISPAD clinical practice consensus guidelines, 23(7) 835-856

  7. Jiang J et al. RCSB PDB-101 (online) https://pdb101.rcsb.org/global-health/diabetes-mellitus/monitoring/complications (Accessed 11 Nov 2024)

  8. Rikos N, et al. (2022) NursRep. 12(3)564-573

  9. Muñoz C, et al. (2019) Clin Diabetes. 37(3) 276-281

  10. Harvard health https://www.health.harvard.edu/a_to_z/type-1-diabetes-mellitus-a-to-z (Accessed 11 Nov 2024)

  11. Cameron FJ et al. (2014). Diabetes Care. 37(6) 1554-1562

  12. Hammersen J et al. (2022) Pediatr Diabetes 22(3), pp.455-62

  13. Aye T et al. (2019) Diabetes Care. 42(3), pp.443-9

  14. DiMeglio LA, et al. (2018) Lancet. 391(10138) - 2449-2462

  15. Nakhla M et al. (2018) CMAJ. 190(14)E416-E421

  16. Phillip et al. (2024) ADA & EASD, Consensus Guidance, Vol 67, pp1731–1759

  17. Mendez Y et al (2017) World J Diabetes 8 (2),pp. 40-44

  18. Ghetti S et al. (2010) J Pediatr 156, pp.109-114

  19. de Wit et al. (2022) Pediatr Diabetes, Dec 23(8)1373-1389

  20. Kelly RC et al. (2023) Diabetic Medicine march 2024, Vol. 41, issue 3

  21. Tack CJ et al. (2018) JMIR Diabetes Oct-Dec 3(4) e17

  22. Digitale E, Scopeblog Stanford. https://scopeblog.stanford.edu/2014/05/08/new-research-keeps-diabetics-safer-during-sleep/ (Accessed 11 Nov 2024)

  23. Gamarra E et al. (2023) J. Pers. Med. 13(2), 374. PMID-36836608

  24. Chiavaroli L et al. (2021) BMJ. 4-374-n1651. PMID-34348965

  25. Shah RB et al. (2016) Int. Jour. of Pharmaceutical Investigation, Vol. 6, Issue 1, pp.1-9

  26. Barnard-Kelly KD et al. (2020). J Diabetes Sci Technol. 14(6)1010-1016

  27. Fagherazzi G (2023) Diab Epidemiology and Management Vol.11,100140

  28. Hendrieckx C et al. (2021) American Diabetes Association, 3rd Edition (U.S.)

  29. Farooqi A et al.(2022) Primary Care Diabetes, Vol. 16, Issue 1,pp.1-10

  30. Leslie RD et al. (2021), Diabetes Care 44, pp. 2449–2456

  31. Butwicka A, et al. (2015) Diabetes Care 38, 453-9

  32. Fleming M et al. (2019) Diabetes Care. 42(9), pp.1700-7

  33. Nielsen HB et al. (2016) Diabetes Res Clin Pract. 121, pp.62-8

  34. Wherrett DK et al. (2015) Diabetes Care 38, pp1975–85

  35. Kimbell et al. (2021) BMC Pediatrics vol. 21, Article no. 160

  36. Rankin D et al. (2014) Pediatric Diabetes, vol. 15, issue 8, pp543-610

  37. Pate T et al. (2019) J Health Psychol Feb24(2), pp.209-218

  38. Dehn-Hindenberg A et al. (2021) Diabetes Care. 44(12), pp.2656-63

  39. Nieuwesteeg A et al. (2016) Diabetic Medicine June 2017, vol. 34, issue 6, pp741-867

  40. Lindström C et al. (2017) J. of Pediatric Nursing 36,pp.149–156

  41. Robinson M-E et al. (2021) Diabet Med. Jun 38(6) e14541

  42. Hummel et al. (2023) Diabetologia, Vol. 66, pp. 1633–1642

  43. Johnson SB et al. (2017) Diabetes Care 40, pp. 1167-1172

  44. Raab J et al. (2016) BMJ Open 6-e011144

  45. Melin J et al. (2020) Pediatr Diabetes 21(5),pp.878-889

  46. Narendran P. (2018) Diabetologia. 62(1) 24-27

  47. Besser R & Griffin K (2024) Lancet Diabetes Endocrinol,pp2213-8587(24)00238-9

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