The Complex Burden of Autoimmune Type 1 Diabetes

Many who are diagnosed with autoimmune T1D find that daily self-management imposes a burden, as self-management requires a large number of repetitive – and potentially challenging – tasks that can be overwhelming, e.g. blood glucose-monitoring, insulin administration, adherence to restrictive diets, and regular physical exercising.²⁰

Daily life for anyone with autoimmune T1D has been estimated to require upwards of 180 health-related decisions by each affected individual.^{21, 22} These decisions stem from at least 42 factors that are known to affect blood glucose levels. Several of these factors can be adjusted by or for the person living with autoimmune T1D, but many cannot, e.g. the menstrual cycle, weather conditions, or other autonomous processes happening in the body.^{23, 24}

Blood glucose-monitoring and insulin administration tasks account for the largest part of the many daily, health-related decisions that must be made by people affected by autoimmune T1D. In this, the currently most common route of insulin administration (subcutaneous insulin injections) is associated with additional challenges such as injection pain, needle phobia, lipodystrophy, compliance difficulties, and peripheral hyperinsulinemia.²⁵

As autoimmune T1D is a chronic condition, the relentlessness of self-management – combined with the astonishing number of daily health-related decision that people must make – can lead to feelings of not doing enough, i.e. feelings of self-mismanagement.^{20, 21}

People with autoimmune T1D report that self-management imposes loss of freedom and lack of spontaneity,²⁰ and it remains a recurring challenge for many to successfully self-manage and achieve blood glucose levels in accordance with guidelines.²⁶

Even with the advent of modern insulin analogs and advanced technologies designed to enable more appropriate reaction to more precise blood glucose-monitoring, it is suggested that technological improvements have elevated the focus on blood glucose management and increased the time spent on self-management, which then adds to the burdensome feelings that decrease quality of life.^{26, 27}

A systematic review and meta-analysis that compared depression prevalence in >1 million individuals with and without diabetes found that the prevalence of diagnosed depression to be significantly higher in people with autoimmune T1D (22% versus 13% in people who were not affected by the condition). These findings were consistent when rates were determined by gender, type of diabetes, method of diabetes and depression assessment, and study setting.²⁹

Connecting the physical burden of autoimmune T1D with the psychosocial burden of ditto, several bodies of research highlight that negative stressors such as pressure to achieve target HbA1c levels according to guidelines, lifestyle considerations, behavior modifications, and fear of complications are factors that may lead to the increased frequency of mood disorders, attempted suicide, and psychiatric care in adults with diabetes.^{19, 26, 28, 30, 31}

Autoimmune T1D may compromise brain development, as data suggest that DKA may cause subtle – yet frequent and persistent – brain injury.^{11, 13, 31}
Children and adolescents with autoimmune T1D are more at risk for pathophysiological brain changes,¹⁹ and a single episode of moderate/severe DKA in young children at diagnosis is associated with lower cognitive scores and altered brain growth.¹³

Children with autoimmune T1D have been found to fare worse than their peers in terms of education and health outcomes, especially those who experience higher mean HbA1c.³²
Adding the risk of brain injury – which may impair learning abilities and educational outcomes – to the physical burden and the persistently demanding self-management, it has been found that living with autoimmune T1D is associated with lower health-related quality of life, higher unemployment, and additional sick leave.³³

Depending on the age of the person who develops autoimmune T1D, the quality of life of parents and other family members may also be negatively affected by the condition. Many parents of young children and adolescents who are diagnosed with autoimmune T1D experience increased psychological distress and share the burden of diabetes management.³⁴

It is highlighted in the literature that caring for a young child with autoimmune T1D can be a relentless undertaking, which can have a detrimental impact on parents’ own well-being, relationships, personal choices, and everyday activities.³⁵

The notion of Monopolization of Life explains how autoimmune T1D can be all-encompassing in parents’ lives and that parents may experience negative impact on their well-being, relationships, and finances due to varying degrees of worrying and feelings of needing to be vigilant in providing care.³⁵

Further, parents’ reactions of shock from their child’s diagnosis, unresolved feelings of guilt, and psychological distress can negatively affect parents’ abilities to manage their child’s diabetes.³⁶

The fear of complications that is found to contribute significantly to anxiety in parents of children with autoimmune T1D may become a vicious cycle where the higher the parental fear (especially of hypoglycemia), the worse child’s success rate in achieving blood glucose levels according to guidelines, and the lower the subjective wellbeing in parents.³⁷

Research shows that mothers and fathers are impacted differently if their children are diagnosed with autoimmune T1D. Mothers are found to often carry a heavier burden than fathers, as family health care is predominantly considered a female task, despite trends toward shared parenting responsibilities.^{19, 35, 37-40}

The observed inequality between parents of different genders may negatively impact mothers of newly diagnosed children with regards to their occupational situation. Mothers of diagnosed children may experience significant employment- and financial losses that can deteriorate their economic situation and mental health.³⁸

Other research suggests that fathers gradually assume more responsibility for care and management of autoimmune T1D, and that the burden of care increases in fathers and decreases in mothers over the course of app. 12 months.³⁹

A final aspect regarding how the burden of autoimmune T1D may impact entire families relates to the transitional period when a diagnosed person transitions from the pediatric to adult care setting.

Being diagnosed with autoimmune T1D in childhood or adolescence may interfere with normative developmental changes and interact with psychological and social factors.¹⁹

During this shift, youths and young adults with autoimmune T1D are at increased risk of psychiatric disorders and about twice as likely to be diagnosed with a psychiatric disorder (e.g. eating-, mood-, anxiety-, and behavior disorders) as peers without autoimmune T1D.^{19, 41}

In addition, the shift to adult care may occur at a point in life that coincides with decreased adherence to diabetes-related management tasks, decreased clinic attendance, and increased risk-taking behaviors.⁴¹