P-190: “Nothing about US without US”: health related quality of life and diabetes specific burden among 640 adolescents with type 1 diabetes from 12 European sweet centers
O Kordonouri, I Arslanoglu, T Biester, N Bratina, F Caetano, K Casteels, D Ö Kizilay, E Mozzillo, V Neuman, A Sobota-Krawczyk, K Tsiroukidou, K Tsochev, K Wójcikiewicz, T von Loh, S Lanziger, K LangeAbstract
Introduction
The perspectives of young people with type 1 diabetes (PROs) are central to the evaluation of long-term treatment.
Objectives
The SWEET-PRO study assesses health related quality of life and the burden of T1D among adolescents and links these findings to clinical parameters.
Methods
In 12 SWEET centers adolescents with T1D aged 12-18 years, at least 12 months of T1D were invited to pseudonymously answer a questionnaire on diabetes burden (PAID-T) and Health related Quality of life (HrQol) (Kidscreen Index). Data diabetes technology, HbA1c, BMI SDS were extracted from the SWEET database.
Results
In 2025, 640 adolescents (49% female, age14.3 (1.8) yrs, age at T1D onset 8.5 (3.6) yrs; HbA1c 7.34 (1.35) %) answered the questionnaire. CGM was used by 89%, CSII by 60%, and AID by 31%. PAID-T sum-score was 39.4 (15.8), with females and those with HbA1c ≥7% reporting a significant higher burden. Overall, 38% experienced a severe level of diabetes distress (above cut-off). Kidscreen 10 sum-score was 36.8 (6.7) and slightly lower than European norm data. HrQol of females and those with an HbA1c ≥7% was significantly lower. The use of diabetes technologies was not associated neither with burden nor with HrQoL, as well as diabetes duration and BMI SDS. Center differences didn’t reach significance. The highest burden for the adolescents was “Feeling that my friends or family don’t understand how difficult living with diabetes can be”.
Conclusions
Despite access to modern technology and HbA1c levels close to the target range, the burden on adolescents with T1D — primarily due to psychosocial barriers and challenges remain high. These barriers should be given greater consideration in long-term care.