Patient relevant outcomes for type 1 diabetes management: A qualitative evidence synthesis
Authors' conclusion
We found that outcomes can be categorized into three different levels (individual, caregivers/family, and systemic). COS usually considers individual level outcomes, but it was found that outcomes beyond the individual, such as those at the caregiver/family and healthcare levels, also matter for people living with T1DM. To meet the needs, all these levels should be measured.
Study context
- Population
- People living with T1D and their caregivers; qualitative studies published 2010–2024 (PubMed, EMBASE, PsychINFO, CINHAL)119 studies
- Outcome
- Patient-relevant outcomes for people living with T1D and caregivers, to inform a Core Outcome Set
Methodological detailssystematic review of qualitative studies, patient and representative consultation on results, People living with T1D and patient representatives consulted for feedback on results
- Systematic review of qualitative studies
- Patient and representative consultation on results
- People living with T1D and patient representatives consulted for feedback on results
Pooled result
As reported in the abstract
Levels of patient-relevant outcomes
- Individual level: diabetes burden, psychological distress, self-efficacy, hypoglycemia burden, diabetes burnout
- Caregivers and family level: caregiver burden, social support, support by diabetes management team, financial impact
- Systemic level: access to healthcare, administrative burden, structural support
Further pooled results
Studies conducted in high-income countries
- Studies in high-income countries
- 85/119 (71.4%)
Original publication
Patient relevant outcomes for type 1 diabetes management: A qualitative evidence synthesis. Diabet Med. Published 20 March 2025. doi:10.
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