Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study

O. Boiko; K. Barnard-Kelly; J. Vercauteren; S. Greenfield; R. Dias; L. M. Quinn; I. Litchfield; T. Papanikolaou; J. L. Dunne; G. Perego; F. Gatti; F. Milano; B. M. Milazzo; V. Di Mattei; K. Lange; C. Mathieu; L. Overbergh; A. G. Ziegler; C. Hurtado Del Pozo; M. G. Scarale; A. Mahieu; A. J. Omar Alsaleh; E. Bosi; P. Narendran; EDENT1FI consortium

doi:10.1111/dme.70297

Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study

O. Boiko
, K. Barnard-Kelly
, J. Vercauteren
, S. Greenfield
, R. Dias
, L. M. Quinn
, I. Litchfield
, T. Papanikolaou
, J. L. Dunne
, G. Perego
, F. Gatti
, F. Milano
, B. M. Milazzo
, V. Di Mattei
, K. Lange
, C. Mathieu
, L. Overbergh
, A. G. Ziegler
, C. Hurtado Del Pozo
, M. G. Scarale

A. Mahieu, A. J. Omar Alsaleh, E. Bosi, P. Narendran^*, EDENT1FI consortium

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

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Abstract

Aims: Research 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.

Methods: The 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.

Results: Findings 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.

Conclusions: The study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.

Original language	English
Article number	e70297
Number of pages	12
Journal	Diabetic Medicine
Volume	43
Issue number	6
Early online date	13 May 2026
DOIs	https://doi.org/10.1111/dme.70297
Publication status	Published - Jun 2026

Bibliographical note

Publisher Copyright:
© 2026 The Author(s). Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK.

Members of the EDENT1FI Consortium: C. Mathieu, P. Gillard, K. Casteels, B. van der Schueren, L. Overbergh, J. Vercauteren (KU Leuven, Belgium); A. G. Ziegler, P. Achenbach, F. Haupt, C. Winkler, S. Hummel (Helmholtz Zentrum Muenchen, Germany); F. Reschke, O. Kordonouri, T. von dem Berge, K. Lange (Hannoversche Kinderheilanstalt, Children's Hospital AUF DER BULT, Germany); T. Pieber, J. Mader, S. Moitzi (Medical University Of Graz, Austria); S. Del Prato, B. Torbeyns (European Diabetes Forum, Belgium); Z. Sumnik, O. Cinek, V. Neuman, B. Berka (University Hospital Motol, Czechia); F. Pociot, B. Petersen, J. Antvorskov, J. H. Klaebel (Steno Diabetes Center Copenhagen, Region Hovedstaden, Denmark); R. Lahesmaa (University of Turku, Finland); H. Hyöty (Tampere University and Tampere University Hospital, Tampere, Finland); J. E. Laiho (Tampere University, Finland); F. Reschke, O. Kordonouri, T. von dem Berge (Hannoversche Kinderheilanstalt, Germany); E. Bonifacio, R. Berner, A. Hommel, A. Loff, G. Gemulla, N. Zubizarreta (Technische Universität Dresden, Germany); E. Bosi, L. Piemonti, V. Lampasona (IRCCS Ospedale San Raffaele, Italy); F. Dotta, G. Sebastiani (Università degli Studi di Siena, Italy); A. Szypowska, K. Karczewski (Medical University of Warsaw, Poland); P. Jarosz-Chobot (Medical University of Silesia, Poland); J. F. Raposo, R. Ribeiro, R. Coelho (Associacao Protectora dos Diabeticos de Portugal, Portugal); M. Peakman, E. Niemoeller, M. Baccara-Dinet (Sanofi, France); J. Van Rampelbergh (Imcyse SA, Belgium); R. Bergholdt, K. Fogh (Novo Nordisk A/S, Denmark); O. Cohen, M. I. Buompensiere (Medtronic Bakken Research Center B.V, The Netherlands); C. Hurtado del Pozo, E. Latres (JDRF, USA); G. Agiostratidou, A. Koralova (The Leona M. and Harry B. Helmsley Charitable Trust, USA). Associated Partners: J. Jackson, D. Darrock, H. Tewson (Digostics Limited, UK); S. Nagallas (Diabetomics, Inc., USA); J. Hedrick, K. Collins (Critical Path Institute, USA); T. Tree (King's College London, UK); C. Dayan, K. Hood, J. Townson, R. Playle (Cardiff University, UK); R. Besser (The Chancellor, Masters and Scholars of the University of Oxford, UK); P. Narendran, I. Litchfield, S. Greenfield, R. Dias (The University of Birmingham, UK).

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

children
diabetes mellitus type 1
psychosocial
qualitative interviews
screening
surveys and questionnaires

ASJC Scopus subject areas

Internal Medicine
Endocrinology, Diabetes and Metabolism
Endocrinology

Access to Document

10.1111/dme.70297Licence: Creative Commons: Attribution (CC BY)

BoikoO2026ExploringFinal published version, 1.07 MBLicence: Creative Commons: Attribution (CC BY)

EDENT1FI: European action for the Diagnosis of Early Non-symptomatic Type 1 diabetes For Intervention
Narendran, P. (Principal Investigator), Litchfield, I. (Co-Investigator), Greenfield, S. (Co-Investigator) & Dayan, C. (Co-Investigator)
UKRI Horizon Europe Underwriting Innovate UK
1/11/23 → 31/10/28
Project: Research

Cite this

Boiko, O., Barnard-Kelly, K., Vercauteren, J., Greenfield, S., Dias, R., Quinn, L. M., Litchfield, I., Papanikolaou, T., Dunne, J. L., Perego, G., Gatti, F., Milano, F., Milazzo, B. M., Di Mattei, V., Lange, K., Mathieu, C., Overbergh, L., Ziegler, A. G., Hurtado Del Pozo, C., ... EDENT1FI consortium (2026). Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study. Diabetic Medicine, 43(6), Article e70297. https://doi.org/10.1111/dme.70297

@article{0cbd8639ab6f42cdada01a6576df75a4,

title = "Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study",

abstract = "Aims: Research 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. Methods: The 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. Results: Findings 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. Conclusions: The study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.",

keywords = "children, diabetes mellitus type 1, psychosocial, qualitative interviews, screening, surveys and questionnaires",

author = "O. Boiko and K. Barnard-Kelly and J. Vercauteren and S. Greenfield and R. Dias and Quinn, \{L. M.\} and I. Litchfield and T. Papanikolaou and Dunne, \{J. L.\} and G. Perego and F. Gatti and F. Milano and Milazzo, \{B. M.\} and \{Di Mattei\}, V. and K. Lange and C. Mathieu and L. Overbergh and Ziegler, \{A. G.\} and \{Hurtado Del Pozo\}, C. and Scarale, \{M. G.\} and A. Mahieu and \{Omar Alsaleh\}, \{A. J.\} and E. Bosi and P. Narendran and \{EDENT1FI consortium\} and C. Mathieu and P. Gillard and K. Casteels and \{van der Schueren\}, B. and L. Overbergh and J. Vercauteren and Ziegler, \{A. G.\} and P. Achenbach and F. Haupt and C. Winkler and S. Hummel and F. Reschke and O. Kordonouri and \{von dem Berge\}, T. and K. Lange and T. Pieber and J. Mader and S. Moitzi and \{Del Prato\}, S. and B. Torbeyns and Z. Sumnik and C. Dayan",

note = "Publisher Copyright: {\textcopyright} 2026 The Author(s). Diabetic Medicine published by John Wiley \& Sons Ltd on behalf of Diabetes UK. Members of the EDENT1FI Consortium: C. Mathieu, P. Gillard, K. Casteels, B. van der Schueren, L. Overbergh, J. Vercauteren (KU Leuven, Belgium); A. G. Ziegler, P. Achenbach, F. Haupt, C. Winkler, S. Hummel (Helmholtz Zentrum Muenchen, Germany); F. Reschke, O. Kordonouri, T. von dem Berge, K. Lange (Hannoversche Kinderheilanstalt, Children's Hospital AUF DER BULT, Germany); T. Pieber, J. Mader, S. Moitzi (Medical University Of Graz, Austria); S. Del Prato, B. Torbeyns (European Diabetes Forum, Belgium); Z. Sumnik, O. Cinek, V. Neuman, B. Berka (University Hospital Motol, Czechia); F. Pociot, B. Petersen, J. Antvorskov, J. H. Klaebel (Steno Diabetes Center Copenhagen, Region Hovedstaden, Denmark); R. Lahesmaa (University of Turku, Finland); H. Hy{\"o}ty (Tampere University and Tampere University Hospital, Tampere, Finland); J. E. Laiho (Tampere University, Finland); F. Reschke, O. Kordonouri, T. von dem Berge (Hannoversche Kinderheilanstalt, Germany); E. Bonifacio, R. Berner, A. Hommel, A. Loff, G. Gemulla, N. Zubizarreta (Technische Universit{\"a}t Dresden, Germany); E. Bosi, L. Piemonti, V. Lampasona (IRCCS Ospedale San Raffaele, Italy); F. Dotta, G. Sebastiani (Universit{\`a} degli Studi di Siena, Italy); A. Szypowska, K. Karczewski (Medical University of Warsaw, Poland); P. Jarosz-Chobot (Medical University of Silesia, Poland); J. F. Raposo, R. Ribeiro, R. Coelho (Associacao Protectora dos Diabeticos de Portugal, Portugal); M. Peakman, E. Niemoeller, M. Baccara-Dinet (Sanofi, France); J. Van Rampelbergh (Imcyse SA, Belgium); R. Bergholdt, K. Fogh (Novo Nordisk A/S, Denmark); O. Cohen, M. I. Buompensiere (Medtronic Bakken Research Center B.V, The Netherlands); C. Hurtado del Pozo, E. Latres (JDRF, USA); G. Agiostratidou, A. Koralova (The Leona M. and Harry B. Helmsley Charitable Trust, USA). Associated Partners: J. Jackson, D. Darrock, H. Tewson (Digostics Limited, UK); S. Nagallas (Diabetomics, Inc., USA); J. Hedrick, K. Collins (Critical Path Institute, USA); T. Tree (King's College London, UK); C. Dayan, K. Hood, J. Townson, R. Playle (Cardiff University, UK); R. Besser (The Chancellor, Masters and Scholars of the University of Oxford, UK); P. Narendran, I. Litchfield, S. Greenfield, R. Dias (The University of Birmingham, UK).",

year = "2026",

month = jun,

doi = "10.1111/dme.70297",

language = "English",

volume = "43",

journal = "Diabetic Medicine",

issn = "0742-3071",

publisher = "Wiley",

number = "6",

}

Boiko, O, Barnard-Kelly, K, Vercauteren, J, Greenfield, S, Dias, R, 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, AG, Hurtado Del Pozo, C, Scarale, MG, Mahieu, A, Omar Alsaleh, AJ, Bosi, E, Narendran, P & EDENT1FI consortium 2026, 'Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study', Diabetic Medicine, vol. 43, no. 6, e70297. https://doi.org/10.1111/dme.70297

TY - JOUR

T1 - Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe

T2 - Protocol for a mixed-methods study

AU - Boiko, O.

AU - Barnard-Kelly, K.

AU - Vercauteren, J.

AU - Greenfield, S.

AU - Dias, R.

AU - Quinn, L. M.

AU - Litchfield, I.

AU - Papanikolaou, T.

AU - Dunne, J. L.

AU - Perego, G.

AU - Gatti, F.

AU - Milano, F.

AU - Milazzo, B. M.

AU - Di Mattei, V.

AU - Lange, K.

AU - Mathieu, C.

AU - Overbergh, L.

AU - Ziegler, A. G.

AU - Hurtado Del Pozo, C.

AU - Scarale, M. G.

AU - Mahieu, A.

AU - Omar Alsaleh, A. J.

AU - Bosi, E.

AU - Narendran, P.

AU - EDENT1FI consortium

AU - Mathieu, C.

AU - Gillard, P.

AU - Casteels, K.

AU - van der Schueren, B.

AU - Overbergh, L.

AU - Vercauteren, J.

AU - Ziegler, A. G.

AU - Achenbach, P.

AU - Haupt, F.

AU - Winkler, C.

AU - Hummel, S.

AU - Reschke, F.

AU - Kordonouri, O.

AU - von dem Berge, T.

AU - Lange, K.

AU - Pieber, T.

AU - Mader, J.

AU - Moitzi, S.

AU - Del Prato, S.

AU - Torbeyns, B.

AU - Sumnik, Z.

AU - Dayan, C.

N1 - Publisher Copyright: © 2026 The Author(s). Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK. Members of the EDENT1FI Consortium: C. Mathieu, P. Gillard, K. Casteels, B. van der Schueren, L. Overbergh, J. Vercauteren (KU Leuven, Belgium); A. G. Ziegler, P. Achenbach, F. Haupt, C. Winkler, S. Hummel (Helmholtz Zentrum Muenchen, Germany); F. Reschke, O. Kordonouri, T. von dem Berge, K. Lange (Hannoversche Kinderheilanstalt, Children's Hospital AUF DER BULT, Germany); T. Pieber, J. Mader, S. Moitzi (Medical University Of Graz, Austria); S. Del Prato, B. Torbeyns (European Diabetes Forum, Belgium); Z. Sumnik, O. Cinek, V. Neuman, B. Berka (University Hospital Motol, Czechia); F. Pociot, B. Petersen, J. Antvorskov, J. H. Klaebel (Steno Diabetes Center Copenhagen, Region Hovedstaden, Denmark); R. Lahesmaa (University of Turku, Finland); H. Hyöty (Tampere University and Tampere University Hospital, Tampere, Finland); J. E. Laiho (Tampere University, Finland); F. Reschke, O. Kordonouri, T. von dem Berge (Hannoversche Kinderheilanstalt, Germany); E. Bonifacio, R. Berner, A. Hommel, A. Loff, G. Gemulla, N. Zubizarreta (Technische Universität Dresden, Germany); E. Bosi, L. Piemonti, V. Lampasona (IRCCS Ospedale San Raffaele, Italy); F. Dotta, G. Sebastiani (Università degli Studi di Siena, Italy); A. Szypowska, K. Karczewski (Medical University of Warsaw, Poland); P. Jarosz-Chobot (Medical University of Silesia, Poland); J. F. Raposo, R. Ribeiro, R. Coelho (Associacao Protectora dos Diabeticos de Portugal, Portugal); M. Peakman, E. Niemoeller, M. Baccara-Dinet (Sanofi, France); J. Van Rampelbergh (Imcyse SA, Belgium); R. Bergholdt, K. Fogh (Novo Nordisk A/S, Denmark); O. Cohen, M. I. Buompensiere (Medtronic Bakken Research Center B.V, The Netherlands); C. Hurtado del Pozo, E. Latres (JDRF, USA); G. Agiostratidou, A. Koralova (The Leona M. and Harry B. Helmsley Charitable Trust, USA). Associated Partners: J. Jackson, D. Darrock, H. Tewson (Digostics Limited, UK); S. Nagallas (Diabetomics, Inc., USA); J. Hedrick, K. Collins (Critical Path Institute, USA); T. Tree (King's College London, UK); C. Dayan, K. Hood, J. Townson, R. Playle (Cardiff University, UK); R. Besser (The Chancellor, Masters and Scholars of the University of Oxford, UK); P. Narendran, I. Litchfield, S. Greenfield, R. Dias (The University of Birmingham, UK).

PY - 2026/6

Y1 - 2026/6

N2 - Aims: Research 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. Methods: The 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. Results: Findings 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. Conclusions: The study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.

AB - Aims: Research 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. Methods: The 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. Results: Findings 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. Conclusions: The study will provide essential insights into how best a general population screening program for T1D can be integrated into existing European health systems.

KW - children

KW - diabetes mellitus type 1

KW - psychosocial

KW - qualitative interviews

KW - screening

KW - surveys and questionnaires

UR - https://www.scopus.com/pages/publications/105035585939

U2 - 10.1111/dme.70297

DO - 10.1111/dme.70297

M3 - Article

C2 - 41933490

AN - SCOPUS:105035585939

SN - 0742-3071

VL - 43

JO - Diabetic Medicine

JF - Diabetic Medicine

IS - 6

M1 - e70297

ER -

Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study

Abstract

Bibliographical note

UN SDGs

Keywords

ASJC Scopus subject areas

Access to Document

Fingerprint

Projects

EDENT1FI: European action for the Diagnosis of Early Non-symptomatic Type 1 diabetes For Intervention

Cite this