Monitoring what matters to people with diabetes: Do we underestimate the importance of behaviour, attitude, and well-being?

Objective: Despite improvements in diabetes monitoring and treatment many patients do not achieve treatment goals. Person-centred approaches have been proposed. However, their practical implementation lags. One barrier is uncertainty about which person-reported outcomes (PROs) should be considered to add the most value. We sought to identify PROs that may be prioritised. Methods: We used data from a multi-stakeholder Delphi study aimed at developing a person-centred diabetes outcome set and analysed which PROs patients considered important for regular monitoring but healthcare providers less so. Linear regression analyses tested whether belonging to either stakeholder group would predict the importance attributed to an outcome. Results: We found disagreement between patients and healthcare providers on eleven PROs. Stakeholder group predicted perceived importance for ten: self-management behaviours (including performance, perceived importance, motivation, and capacity), sleep quality, diabetes symptoms, screening visit attendance, health status, lifestyle behaviours, and side effects. Conclusion: Our findings suggest that, according to patients’ preferences, self-management behaviours, health status and sleep are currently not adequately considered in diabetes management, compromising person-centred care. Practical implications: This study suggests that prioritising these PROs can facilitate the implementation of more person-centred diabetes monitoring which may support better-informed treatment decisions to achieve treatment goals.