Global status of the determinants of adherence to home-based management of type 1 diabetes mellitus

Type 1 diabetes mellitus (T1DM) is a chronic condition requiring family-centered therapy for children and a transition toward self-management during adolescence and adulthood. Achieving optimal glycemic control and preventing acute, microvascular, and macrovascular complications remain significant challenges in the management of T1DM, and suboptimal glycemic control is prevalent. Notably, data from the Thai Type 1 Diabetes and Diabetes diagnosed before the Age of 30 years Registry, Care and Network (T1DDAR CN) study indicate that glycemic control is most difficult to achieve during adolescence.^[1] Effective diabetes management demands not only technical knowledge of insulin pharmacokinetics, carbohydrate counting, and physical activity but also consistent adherence to complex medical regimens. These goals necessitate collaboration among patients, caregivers, school staff, and medical personnel. A child’s developmental stage, mental health, and the psychological, liminal experiences of living with a chronic illness can profoundly affect treatment adherence.^[2] Environmental, economic, and health system factors also play pivotal roles. Suboptimal adherence to insulin therapy is associated with increased glycated hemoglobin (HbA1c) levels, higher rates of hospitalization, and heightened risks for both acute and chronic diabetic complications.^[3]

The journey of T1DM involves a shift from total dependence on caregivers in early childhood to a gradual transition to self-management in adolescence. For infants and toddlers, limited expressive language and frequent feeding patterns pose unique difficulties; consequently, treatment adherence in this age group is entirely dependent on the primary caregiver.^[2] When children reach school age, they face significant challenges with complex cognitive tasks such as carbohydrate counting and insulin dose adjustment. They are also vulnerable to negative emotions, such as anger and sadness, due to perceived intrusions on their social life and the burden of stringent dietary restrictions. For adolescents, a multifaceted constellation of factors impacts treatment adherence.^[4] Physiological changes, such as increased insulin resistance, coupled with weight and body image concerns, often worsen glycemic control.^[5] Adolescents may intentionally omit or lower insulin doses as a maladaptive means of weight control.^[4] Risk-taking behaviors involving alcohol, tobacco, and illicit drugs during adolescence significantly increase the likelihood of acute complications and hospitalization.^[2,4,5]

T1DM imposes a significant humanistic burden on patients and caregivers,^[6] exacerbating the challenges of daily management.^[6,7] Importantly, diabetes distress, the emotional response to the relentless daily demands of the disease, is distinct from clinical depression and is a significant predictor of poor outcomes.^[5,7,8] Diabetes burnout leads to resistance toward daily management routines, such as intentional insulin omission or the neglect of blood glucose monitoring.^[4] Parental burnout arises from the high burden of care; parents often experience significant psychological distress, anxiety, and sleep deprivation.^[2,6] Consequently, their management styles may become intrusive, rigid, and controlling, potentially precipitating family conflict.^[4,5] Depression in individuals with T1DM is directly linked to higher HbA1c levels and diminished adherence to blood glucose monitoring.^[2,5] Youth with T1DM experience higher rates of depression, anxiety, and eating disorders. Approximately one-third of adults with T1DM experience clinically significant symptoms of depression and anxiety.^[7] Furthermore, adult burnout leads to anhedonia, self-defeating cognitions, and diminished self-care behaviors. While continuous glucose monitoring (CGM) is transformative, it can occasionally trigger hypervigilance or obsessive-compulsive behaviors.^[7] Socially, individuals with T1DM face the burden of stigma, pity, and ostracism, which can act as a barrier to self-management.^[5,7] Fear of being perceived as different leads many to conceal their diagnosis and intentionally neglect insulin doses or blood glucose monitoring in social settings such as school cafeterias or parties.^[5] In addition, sleep disturbances, recognized as somatic symptoms of depression and burnout, create a cycle where poor sleep reduces the energy and motivation needed for self-care.^[6]

Fear of hypoglycemia has an indirect association with metabolic control in children and adolescents with T1DM, a relationship that is often mediated by parenting stress.^[9] This fear leads to compensatory behaviors, including increased caloric intake (preferring simple carbohydrates), decreased physical activity, and intentional underdosing of insulin^[10] to maintain safe but suboptimal hyperglycemic levels.

Students with T1DM face significant difficulties managing their condition at school, including challenges during physical education classes, conflicts with teachers, limited teacher knowledge of T1DM, and inadequate emergency management. A lack of support from teachers, the absence of a school nurse, and inadequate medical facilities create further barriers to effective management, specifically in monitoring blood glucose levels, administering insulin, and responding to emergencies,^[2] especially in limited-resource settings (LRS).

The systemic coverage of insulin, monitoring supplies, and diabetes technology through national policy is a primary determinant of treatment adherence. In LRS, where insulin, test strips, CGM, and automated insulin delivery (AID) systems are not reimbursed or subsidized, these essential items are often unaffordable. This results in a significant financial burden that forces families to ration or miss insulin doses and reduce the frequency of glucose testing, directly compromising patient safety.^[11]

In this issue of the journal, Okello et al. present results of a study among 91 caregivers of children with T1DM in Kenya.^[12] Their findings reveal that adherence to T1DM home management is suboptimal. Only one-fourth of children adhered to blood glucose monitoring and physical activity, while one-third adhered to dietary advice and three-fourths to insulin treatment. The study highlights that family-centered support, treatment affordability and availability, and diabetes education significantly influence adherence.

Individuals living with T1DM face multifaceted obstacles to treatment adherence. Family-centered diabetes education should be personalized and developmentally appropriate. Interventions addressing insulin adherence and its related motivational determinants, including attitudes, social influences, and self-efficacy, should be tailored to specific populations and settings. These motivational determinants include:

1. Attitudes, such as perceptions regarding the advantages and disadvantages of insulin adherence, the perceived effectiveness of treatment in controlling diabetes and preventing complications

2. Social support from family and friends and

3. Self-efficacy is conceptualized as both control beliefs and the ability to maintain management behaviors under challenging situations.^[3]

Collaboration among multidisciplinary health professionals, caregivers, and teachers, augmented by group support and access to advanced therapies such as CGM and AID systems, is essential. These elements, combined with equitable access to care, will enhance diabetes care and improve treatment adherence. In LRS, government-supported diabetes education and blood glucose monitoring have been shown to improve clinical outcomes.^[13] In addition, the establishment of national T1DM registries and longitudinal studies is imperative to monitor long-term outcomes and systemic needs.^[1,13] The International Society for Pediatric and Adolescent Diabetes recommends recognizing and managing psychosocial issues, including stigma, diabetes distress, eating disorders, anxiety, depression, family issues, attention-deficit disorders, fear of hypoglycemia, alcohol and other substance abuse among individuals living with diabetes and their caregivers, and advocating with health policy administrators to ensure that life-saving insulin and advanced diabetes technologies are accessible to all.^[11]