This conceptual narrative review examines how current frameworks that classify the economic burden of pediatric type 1 diabetes (T1D) focus largely on measurable financial hardship, affordability, and cost-related distress, but do not sufficiently capture the household-level resources required for everyday care. The authors propose a new three-level burden model intended to integrate missing elements and to link costs visible in clinical care with the implementation burden experienced by families and the lived everyday experience of the child-parent-family triad.
Existing literature documents many discrete elements of pediatric T1D burden: direct healthcare costs, out-of-pocket expenses, informal caregiving, dietary adaptation, technology-related expenses, parental distress, and time burden. However, these elements are often reported separately rather than as an integrated, cumulative burden that affects the household’s capacity to implement and sustain care. The review argues that sustainability of modern T1D management should be evaluated not only by device availability, reimbursement, or clinical effectiveness but also by families’ capacities in time management, digital access and skills, organization, and decision-making.
The proposed model offers an organizing principle that connects three levels: (1) the clinical and measurable costs captured in healthcare settings, (2) the household implementation burden borne by families as they operationalize care at home and in daily life, and (3) the lived experience of the child-parent-family triad. By framing these levels together, the model aims to interpret the everyday-life economic burden of pediatric T1D as a complementary dimension that is meaningfully interpretable at household and caregiver levels.
The Type 1 Diabetes Everyday-Life Burden–Pediatric (T1D-ELB-P) framework highlights five interrelated domains through which burdens accumulate:
Lifestyle and dietary adaptation: changes in family routines, meal planning, and feeding practices required to manage glycemic control.
Non-reimbursed or partially reimbursed consumables and accessories: ongoing costs for supplies and accessories that may not be fully covered by reimbursement systems.
Digital infrastructure and digital health literacy: access to reliable internet, compatible devices, and the ability to use diabetes technologies and digital health tools effectively.
Time, attention, and decision burden: the temporal investment, continuous monitoring, and frequent decision-making required of caregivers and older children.
Educational, extracurricular, and workplace coordination: communication and coordination needs across schools, extracurricular programs, and caregivers’ workplaces to support safe daily diabetes management.
The framework emphasizes that these domains interact and can accumulate to form a household implementation burden that goes beyond traditional financial metrics.
In the T1D-ELB-P framework, modern diabetes technology (for example, advanced glucose monitoring or automated insulin delivery systems) is treated not as an isolated focus but as a cross-cutting factor. Technology can make the implementation work more visible because it requires digital infrastructure, training, maintenance, interpretation, and ongoing decision-making. Thus, technology both offers clinical benefits and imposes additional household requirements in digital literacy, time, and coordination.
The clinical and policy significance of the framework is that real-world use and sustainability of modern T1D care are embedded in the everyday functioning of the child-parent-family triad. Evaluations that concentrate solely on clinical effectiveness or device access may miss critical determinants of whether families can adopt and maintain technologies in daily life. Health policy, reimbursement decisions, and clinical pathways should account for family-level capacities and implementation costs to better understand equity and long-term sustainability.
The authors recommend that future cost-of-illness studies, health technology assessments, and patient-centered research explicitly measure family implementation costs and capacities. Integrating household-level measures—such as time burden, digital access and literacy, and coordination demands—into evaluations could produce a more complete picture of the economic and practical burdens of pediatric T1D and inform interventions designed to reduce barriers to sustainable care.
The article reports that it contains no studies with human or animal subjects performed by the authors and that the authors declare no competing interests.