The use of disease-specific patient-reported outcomes for diabetes is recommended as it may reveal important information on how a treatment affects quality-of-life. Furthermore, such information will help to contextualize observed effects on measures derived from continuous glucose monitoring such as glucose variability, glucose excursions and time spent in normal range. (European Medicines Agency) Hence, the aim of the study is to create a survey for 12 to 18 years old with T1D to improve (the value of) care and measuring outcomes that matter to patients.
Our Patient Related Outcome Study shall pick up speed in 2022. The first workshops took place and the project team wants to select questionnaires and draft the study protocol before getting in touch with the SWEET members. Be prepared, that the approval from local ethic committees will most likely be necessary and need to be obtained.