Background
Engaging diverse stakeholders in developing core outcome sets (COSs) can produce more meaningful metrics as well as research responsive to patient needs. The most common COS prioritisation method, Delphi surveys, has limitations related to selection bias and participant understanding, while qualitative methods like group discussions are less frequently used. This study aims to test a co-creation approach to COS development for type 1 diabetes (T1DM) in Peru.
Methods
Using a co-creation approach, we aimed to prioritise outcomes for T1DM management in Peru, incorporating perspectives from people with T1DM, caregivers, healthcare professionals, and decision-makers. A set of outcomes were previously identified through a systematic review and qualitative evidence synthesis. Through qualitative descriptive methods, including in-person workshops, each group of stakeholders contributed to the ranking of outcomes. Decision-makers also discussed the feasibility of measuring these outcomes within the Peruvian healthcare system.
Results
While priorities varied among participant groups, all underscored the significance of monitoring healthcare system functionality over mortality. Participants recognized the interconnected nature of healthcare system performance, clinical outcomes, self-management, and quality of life. When combining the rankings from all the groups, metrics related to economic impact on the individual and structural support, policies promoting health, and protecting those living with T1DM were deemed more important in comparison to measuring clinical outcomes.
Conclusion
We present the first COS for T1DM focused on low-and-middle-income countries and show aspects of care that are relevant in this setting. Diverse prioritisation among participant groups underscores the need of inclusive decision-making processes. By incorporating varied perspectives, healthcare systems can better address patient needs and enhance overall care quality.
Jessica Hanae Zafra-Tanaka, Guillermo Almeida, Jackelyn Elizabeth Andrade Montalvo, Cecilia Anza-Ramirez, Josselyn Jauregui, Silvana Perez-Leon, Maria Lazo-Porras, Nikol Mayo-Puchoc, Alvaro Taype-Rondán, J. Jaime Miranda, David Beran
Disease Category: Endocrine & metabolic
Disease Name: Type 1 Diabetes
Age Range: Unknown
Sex: Either
Nature of Intervention: Any
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Patient/ support group representatives
- Researchers
- COS methods research
- COS for practice
- Other
- Systematic review
1. Session 1 provided a brief overview of the objectives to all participants.
2. Session 2 involved initial prioritisation activities conducted within stakeholder-specific groups to foster open discussion. Each group was given a set of 6 cards (one for each outcome group) that they needed to order in a line from ‘very important’ to ‘not important’.
3. A plenary session where priorities identified in group discussions were shared, allowing participants to delineate which outcome groups were deemed ‘very important’ and to discuss the rationale behind these choices.
4. Session 3 offered a second opportunity for prioritisation in groups. In this opportunity, each group was given 11 cards (one card per outcome) to order from ‘very important’ to ‘not important’. Additionally, decision makers had to consider the feasibility of measuring these outcomes within the Peruvian healthcare system.
5. The final plenary session aimed at presenting the prioritisation from each group and the arguments behind it.