Type 1 Diabetes Leads to Significant Disease Burden on Children and Caregivers


Similar burdens were observed among both children with a diagnosis of type 1 diabetes (T1D) and their informal caregivers, both at the time of diagnosis and when the disease was already established.

Type 1 diabetes (T1D) imposes a significant disease burden on children affected by the disease and their caregivers, both independently and through transactional interactions within family units, according to data from a review published in Diabetology & Metabolic Syndrome.

T1D is incurable and needs constant attention due to the many different aspects of managing the disease. This can lead to major lifelong consequences for the individual with the disease and their families.

Type 1 diabetes | Image Credit: © Svetlana -

Type 1 diabetes | Image Credit: © Svetlana -

Families are often tasked with providing significant amounts of care to children with T1D, especially informal care, which is often correlated with high levels of psychological distress, the investigators wrote. This stress can sometimes be even larger for family members than it is for the patients.

The investigators aimed to provide a review that summarizes the humanistic burden of T1D on children, adolescents, and young adults and their informal caregivers as part of a family unit. They focused on elements of distress that are common between children with T1D and their informal caregivers to better identify the burdens present.

Disease burden in children and young adults with T1D was examined first. Their review of selected literature revealed multiple factors that affect the quality of life (QOL) of children, adolescents, and young adults with T1D.

Seven different categories were created to group elements associated with disease burden, and each included specific factors: sociodemographic, physical, disease-related, treatment-related, social category, coping abilities, and an overarching category, the investigators wrote.

Further, the overall impact on the child or patient response was categorized into 3 types of expression: emotional response, social response, and physical response. Some of the factors listed were specific to children with newly diagnosed T1D, while other factors were reported by children that had T1D for any duration.

Next, the investigators examined the disease burden in caregivers, both those with children with a recent diagnosis and children with T1D of any duration, respectively. The factors were categorized into 6 categories including different aspects: social factors such as work-related problems, coping abilities like sacrifice and adaptation, emotional factors like self-confidence, disease-related factors, sociodemographic factors, and treatment-related factors such as using remote monitoring.

Caregivers of recently diagnosed children with T1D have further disease burden, including experiencing worry, self-blame, mental distress, and a decrease in sleep quality, the investigators observed.

Based on the compiled data, the reviewers provided common burdens related to T1D diagnosis that are shared by children and their caregivers as part of the family unit. The common challenges they found were unique in that the develop around the dynamic relationship between a child and their caregiver and make them amenable to specific interventions using familial interactions.

Children’s age was an important factor and can affect how both caregivers and children experience burdens, either shortly after diagnosis or any time after. The support of family members and social support, in addition to stigma, affected the common burden among the family unit regardless of the duration of disease. Common coping factors include adapting, normalizing, and adopting strategies, according to the investigators.

Similar patterns of response to the disease were observed among children and caregivers. Each group experiences stress, depression, anxiety, and worry, which were observed in children with both recently diagnosed T1D and those who have T1D of any duration. Furthermore, mental health issues are a common burden, in addition to problems with their physical well-being.

Throughout their review, the investigators focused on the time of diagnosis, believing that the onset of T1D is often a shocking and unexpected event for both children and their caregivers, and may cause acute affects, whereas disease burden at a later period is chronic in its nature. They found that more studies were conducted to analyze the burden of established T1D as opposed to a new diagnosis.

Notably, symptoms such as sleeping problems, fatigue, mental health, and social functioning were reported among both the child and the caregiver, mainly in populations with a diagnosis of T1D for longer than 3 months. This association could arise because the newly diagnosed population is not well studied, or because caregivers’ attention at diagnosis is focused on how to cope with the new disease.

The investigators discussed how the same transactional interaction within the family unit could be used as a strategy to reduce disease burden, by way of strengthening individuals for the benefit of the whole family. They also noted that the information gathered can be used to support both children and caregivers to prevent excess burden and mitigate its development.

“This manuscript underscores the need for continued research including longitudinal studies and prospective interventional trials to better understand the effects of different approaches on the burden on families living with a child with T1D,” the investigators concluded.


Allen V, Mahieu A, Kasireddy E, et al. Humanistic burden of pediatric type 1 diabetes on children and informal caregivers: systematic literature reviews. Diabetol Metab Syndr. 2024;16:73. doi:10.1186/s13098-024-01310-2

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