TY - JOUR
T1 - Standardising personalised diabetes care across European health settings
T2 - A person-centred outcome set agreed in a multinational Delphi study
AU - Porth, Ann Kristin
AU - Huberts, Anouk Sjoukje
AU - Rogge, Alizé
AU - Bénard, Angèle Helene Marie
AU - Forbes, Angus
AU - Strootker, Anja
AU - Del Pozo, Carmen Hurtado
AU - Kownatka, Dagmar
AU - Hopkins, David
AU - Nathanson, David
AU - Aanstoot, Henk Jan
AU - Soderberg, Jeanette
AU - Eeg-Olofsson, Katarina
AU - Hamilton, Kathryn
AU - Delbecque, Laure
AU - Ninov, Lyudmil
AU - Due-Christensen, Mette
AU - Leutner, Michael
AU - Simó, Rafael
AU - Vikstrom-Greve, Sara
AU - Rössner, Sophia
AU - Flores, Vanesa
AU - Seidler, Yuki
AU - Hasler, Yvonne
AU - Stamm, Tanja
AU - Kautzky-Willer, Alexandra
N1 - Publisher Copyright:
© 2023 The Authors. Diabetic Medicine published by John Wiley & Sons Ltd on behalf of Diabetes UK.
PY - 2024/5
Y1 - 2024/5
N2 - Objective: Standardised person-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person-centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings. Methods: We used a three-round questionnaire-based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person-reported outcomes. Subsequent consensus meetings concluded the study. Results: The list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes-specific well-being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well-being and diabetes self management-related outcomes). Conclusions: PROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project.
AB - Objective: Standardised person-reported outcomes (PRO) data can contextualise clinical outcomes enabling precision diabetes monitoring and care. Comprehensive outcome sets can guide this process, but their implementation in routine diabetes care has remained challenging and unsuccessful at international level. We aimed to address this by developing a person-centred outcome set for Type 1 and Type 2 diabetes, using a methodology with prospects for increased implementability and sustainability in international health settings. Methods: We used a three-round questionnaire-based Delphi study to reach consensus on the outcome set. We invited key stakeholders from 19 countries via purposive snowball sampling, namely people with diabetes (N = 94), healthcare professionals (N = 65), industry (N = 22) and health authorities (N = 3), to vote on the relevance and measurement frequency of 64 previously identified clinical and person-reported outcomes. Subsequent consensus meetings concluded the study. Results: The list of preliminary outcomes was shortlisted via the consensus process to 46 outcomes (27 clinical outcomes and 19 PROs). Two main collection times were recommended: (1) linked to a medical visit (e.g. diabetes-specific well-being, symptoms and psychological health) and (2) annually (e.g. clinical data, general well-being and diabetes self management-related outcomes). Conclusions: PROs are often considered in a non-standardised way in routine diabetes care. We propose a person-centred outcome set for diabetes, specifically considering psychosocial and behavioural aspects, which was agreed by four international key stakeholder groups. It guides standardised collection of meaningful outcomes at scale, supporting individual and population level healthcare decision making. It will be implemented and tested in Europe as part of the H2O project.
KW - diabetes mellitus, Type 1
KW - diabetes mellitus, Type 2
KW - patient-centred care
KW - patient-reported outcome measures
KW - person-centred care
KW - person-reported outcomes
KW - value-based healthcare
UR - http://www.scopus.com/inward/record.url?scp=85178244024&partnerID=8YFLogxK
U2 - 10.1111/dme.15259
DO - 10.1111/dme.15259
M3 - Article
C2 - 38017616
AN - SCOPUS:85178244024
SN - 0742-3071
VL - 41
JO - Diabetic Medicine
JF - Diabetic Medicine
IS - 5
M1 - e15259
ER -