Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study.
Boiko O., Barnard-Kelly K., Vercauteren J., Greenfield SM., Dias RP., Quinn LM., Litchfield I., Papanikolaou T., Dunne JL., Perego G., Gatti F., Milano F., Milazzo BM., Di Mattei V., Lange K., Mathieu C., Overbergh L., Ziegler A-G., Hurtado Del Pozo C., Scarale MG., Mahieu A., Omar Alsaleh AJ., Bosi E., Narendran P., EDENT1FI Consortium .
AimsResearch and policy initiatives for type 1 diabetes (T1D) across European countries demonstrate an emergent, critical shift towards universal paediatric screening. National adaptations of screening, however, remain under-researched. The current study, as part of the EU-funded EDENT1FI programme, aimed to examine the psychosocial impact and acceptability of screening according to local contexts and regions.MethodsThe EDENT1FI screening research programme includes 27 partners involved in implementing screening across eight European countries-four countries already implementing national or local research screening programmes and four countries that are new adopters. The study consists of four sub-studies with assessments performed at five timepoints, from screening baseline to insulin-requiring T1D: (1) we examine the screening-specific psychological impact on families using a novel questionnaire for parents of screened children; (2) we further measure the psychological wellbeing of parents by administering validated questionnaires; (3) we explore parental acceptability through semi-structured interviews and (4) we explore professional stakeholder acceptability via semi-structured interviews. Data analysis will integrate questionnaire responses and thematic analysis for the interviews.ResultsFindings should provide a deeper understanding of the psychosocial aspects of universal paediatric screening measured longitudinally. The experience of implementation context across countries will be harmonised with the attitudes towards and practices of screening to inform best practice for scaling up universal screening.ConclusionsThe study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.