Which diabetes specific patient reported outcomes should be measured in routine care? A systematic review to inform a core outcome set for adults with Type 1 and 2 diabetes mellitus: The European Health Outcomes Observatory (H2O) programme

Hamilton, Kathryn; Forde, Rita; Due‐Christensen, Mette; Katarina, Eeg-Olofson,; Nathanson, David; Rössner, S; Sara, Vikstrom-Greve,; Ann-Kristin, Porth,; Seidler, Yuki; Kautzky‐Willer, Alexandra; Delbecque, Laure; Zeynep, Ozdemir Saltik, Asli; Yvonne, Hasler,; Vanesa, Flores,; Stamm, Tanja; Hopkins, David; Forbes, Angus

doi:10.1016/j.pec.2023.107933

Cited by 8 publications

(2 citation statements)

References 57 publications

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“…Graphical summary of the study flow and results. * Data published elsewhere 21 . CA, community advocates; CO, clinical outcome; HCP, healthcare professionals; ICHOM, International Consortium for Health Outcomes Measurement; PRO, person‐reported outcome; PWD, People with diabetes; SNDR, Swedish National Diabetes Register.…”

Section: Resultsmentioning

confidence: 99%

“…The preliminary outcomes presented in the first Delphi round were based on 53 PROs identified via a systematic literature review 21 and 54 clinical variables extracted from a national diabetes register 22 and the ICHOM diabetes outcome set 12 . We conducted focus groups with people with diabetes and healthcare professionals to identify which outcomes they considered important for diabetes management and used the results to shortlist the person‐reported and clinical outcomes to 64 outcomes.…”

Section: Methodsmentioning

confidence: 99%

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Standardising personalised diabetes care across European health settings: A person‐centred outcome set agreed in a multinational Delphi study

Porth,

Huberts,

Rogge

et al. 2023

Diabet Med

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ObjectiveStandardised 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.MethodsWe 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.ResultsThe 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).ConclusionsPROs 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.

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Section: Resultsmentioning

confidence: 99%