Treatment Burden and QoL in Young Adults with T1D
Anka Van Gastel, Matthijs Graner-Baars, Anne M. Stiggelbout, Viet-Thi Tran, Erik J. Giltay, Sean F. Dinneen, Jessica Mesman, Joris Swaak, Henk-Jan Aanstoot, Victor M. Montori, Eelco J.P. De Koning and Marleen Kunneman
Treatment burden and health-related quality of life in young adults with type 1 diabetes.Diabet Med. 2026 Jun 3:e70376.
Young adulthood — broadly defined as ages 18 to 30 — is a life stage marked by major transitions: leaving home, forming relationships, pursuing education, and entering the workforce. For young adults with type 1 diabetes (T1D), these ordinary challenges coincide with the demanding and unrelenting work of managing a chronic condition. Despite being at highest risk for poor glycaemic outcomes, diabetic ketoacidosis and diabetes-specific distress, little is known about how young adults with T1D experience treatment burden and how this affects their quality of life. This study, conducted by researchers from Leiden University Medical Center, Mayo Clinic, Diabeter, Maastricht University, and institutions across the Netherlands, Ireland and France, aims to fill that gap.
An online survey was completed by 294 Dutch young adults with T1D (aged 18–30). Treatment burden was assessed using the validated Treatment Burden Questionnaire (TBQ, 0–150, higher = more burden), and health-related quality of life (HRQoL) was measured using the Type 1 Diabetes and Life questionnaire (T1DAL, 0–100, higher = better quality of life) for the relevant age bands. Multivariable regression analyses examined associations with sociodemographic, clinical and diabetes management characteristics.
Key findings:
- Treatment burden is substantial: The mean TBQ score was 59.6 out of 150 — a level that, in other chronic disease populations, has been associated with an unsustainable workload of care. This suggests that a significant proportion of young adults with T1D may be at risk of becoming overwhelmed by care demands.
- Being regularly reminded of illness is the greatest source of burden: The highest-scoring TBQ item was the experience that regular medical care constantly reminds participants of their health problems. Medication precautions and relationships with healthcare providers contributed least to burden.
- Quality of life is moderate and lowest in emotional and daily functioning: Mean T1DAL scores were 55.9 for those aged 18–25 and 61.8 for those aged 26–30, both in the moderate range. The domain 'Emotional experiences and daily activities' consistently scored lowest across both age groups, reflecting the substantial impact of diabetes on emotional wellbeing and day-to-day life.
- Treatment burden and HRQoL are strongly and inversely related: A Pearson correlation of −0.69 (p<0.001) was found between TBQ and T1DAL, confirming that higher burden goes hand in hand with lower quality of life.
- Female gender and lower time in range are associated with higher treatment burden: In the adjusted model, women reported on average 13.5 TBQ points higher burden than men. Each standard deviation increase in time in range corresponded to a 6.3-point reduction in burden.
- Satisfaction with the diabetes management approach matters more than the type of device: Dissatisfaction with the diabetes management approach — rather than the specific technology used — was independently associated with lower HRQoL, with a mean difference of −5.6 HRQoL points. Higher time in range was also associated with better HRQoL.
- The burden of care may contribute to diabetes burnout: Frequent illness-related demands that interfere with daily life may lead to disengagement from treatment, making it harder to achieve glycaemic targets and reinforcing a negative cycle of poorer outcomes and wellbeing. Mental health conditions were among the most commonly reported comorbidities in the sample.
The findings highlight that the daily work of managing T1D carries a significant cost for young adults — not only clinically, but emotionally and socially. The authors are currently co-designing a tool with young adults to help facilitate conversations about treatment burden and care fit in clinical consultations.
Concluding, the authors state
"Young adults with T1D experience substantial treatment burden which is particularly high for daily care tasks. Their HRQoL is moderate, with the emotional and daily functioning domains being the lowest scoring domains. It is important for clinicians to recognize the considerable and continuous efforts young adults invest in managing their diabetes and the impact this has on their well-being."-
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