O-54: Screening and early detection of type 1 diabetes: “Would you have wanted to know beforehand?” – survey on the perspectives of parents and their children with type 1 diabetes
A Galler, S Müther, D Hüseman, T Grimm, K Raile, M Balke, B Böttcher, S GolembowskiAbstract
Introduction
Currently, screening and early detection of type 1 diabetes (T1D) using islet autoantibody testing is mainly done in research trials. Routine screening and detection of pre-symptomatic early-stage (stage 1 or 2) T1D outside of research programs is discussed controversially.
Objectives
To explore the perspectives of families with a child with T1D on the topic of early detection of T1D.
Methods
All eight diabetes centres in the region Berlin and Brandenburg, Germany, invited the families with a child with T1D to participate in the survey “Would you have wanted to know beforehand?”. Clinical data sex, age, and diabetes duration were obtained. Parents with a child with T1D and youth with T1D over 10 years old answered a questionnaire using Likert scale whether they would have wanted to know in advance about developing T1D and how it would have been for them to know about an early-stage T1D.
Results
A total of 720 families (488 mothers, 211 fathers, and 544 youth with T1D, median diabetes duration 4.5 years) participated. The table depicts the answers of the participants. Overall, 57% of parents and 41% of youth with T1D would have liked to know of the development of T1D beforehand. About 34% of parents and 32% of youth expected that they would have felt bad about the knowledge of early-stage T1D. About 40% of parents thought that their child would have felt bad about knowing beforehand. Out of all, 51% of parents desired early detection of T1D for the sibling of their child with T1D.
Conclusions
About one third of parents and one third of youth would have been negatively affected by the knowledge of early-stage T1D. Because of the parents’ and youth’s own assessment of the burden of knowing, evidence-based concepts that ensure the well-being of both, parents and youth, after early detection are necessary. Careful ethical consideration and assessing the needs of families are required before screening and early detection of T1D are offered or implemented.