Jessica Hanae Zafra-Tanaka, Adela Del Valle, Nathaly Aya Pastrana, J Jaime Miranda, David Beran
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引用次数: 0
Abstract
Aims: Identify and define relevant outcomes for people living with T1DM and their caregivers, and explore the differences across contexts and life stages. This exercise will inform the development of a Core Outcome Set (COS), an essential list of outcomes that should be measured for T1DM.
Methods: A systematic review of qualitative studies published between 2010 and 2024 using PubMed (Medline), EMBASE, PsychINFO, and CINHAL was conducted. Studies that explored the perspectives and opinions of people living with T1DM or their caregivers around care and the healthcare system were included. Qualitative evidence synthesis was used to identify relevant outcomes for people living with T1DM and their caregivers. People living with T1DM and patient representatives were consulted to provide feedback on the results.
Results: 119 studies were included; 85/119 (71.4%) conducted in high-income countries. Through the qualitative evidence synthesis, we found three levels of outcomes: (1) individual level (diabetes burden, psychological distress, self-efficacy, hypoglycemia burden, and diabetes burnout), (2) caregivers and family level (caregiver burden, social support, support provided by diabetes management team, and financial impact), and (3) systemic level (access to healthcare, administrative burden, structural support).
Conclusions: 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.
期刊介绍:
Diabetic Medicine, the official journal of Diabetes UK, is published monthly simultaneously, in print and online editions.
The journal publishes a range of key information on all clinical aspects of diabetes mellitus, ranging from human genetic studies through clinical physiology and trials to diabetes epidemiology. We do not publish original animal or cell culture studies unless they are part of a study of clinical diabetes involving humans. Categories of publication include research articles, reviews, editorials, commentaries, and correspondence. All material is peer-reviewed.
We aim to disseminate knowledge about diabetes research with the goal of improving the management of people with diabetes. The journal therefore seeks to provide a forum for the exchange of ideas between clinicians and researchers worldwide. Topics covered are of importance to all healthcare professionals working with people with diabetes, whether in primary care or specialist services.
Surplus generated from the sale of Diabetic Medicine is used by Diabetes UK to know diabetes better and fight diabetes more effectively on behalf of all people affected by and at risk of diabetes as well as their families and carers.”