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Abstract: TH-PO318

Standardized Outcomes in Nephrology-Peritoneal Dialysis (SONG-PD) Consensus Workshop with Patients, Caregivers, and Health Professionals to Establish a Core Outcome Set for Trials in PD

Session Information

Category: Dialysis

  • 703 Dialysis: Peritoneal Dialysis

Authors

  • Manera, Karine E., The University of Sydney, Westmead, New South Wales, Australia
  • Tong, Allison, The University of Sydney, Westmead, New South Wales, Australia
  • Craig, Jonathan C., Flinders University, Adelaide, South Australia, Australia
  • Shen, Jenny I., LaBiomed at Harbor-UCLA, Torrance, California, United States
  • Cho, Yeoung Jee, Princess Alexandra Hospital, Brisbane, Queensland, Australia
  • Johnson, David W., Princess Alexandra Hospital, Brisbane, Queensland, Australia
Background

Outcomes reported in peritoneal dialysis (PD) trials are very diverse, measured inconsistently and may not be important to patients, families and clinicians. We aimed to establish a core outcome set based on the shared priorities of all stakeholders to improve the consistency and relevance of outcomes to patients and healthcare providers to inform decision-making.

Methods

We convened an international Standardized Outcomes in Nephrology-Peritoneal Dialysis stakeholder consensus workshop in May 2018 in Vancouver, Canada. In facilitated breakout groups, participants discussed the development and implementation of core outcomes for trials in PD.

Results

Nineteen patients/caregivers and 51 health professionals attended the workshop. Participants confirmed that “life participation” was a main goal of PD, which reflected the need for flexibility and freedom. Participants regarded life participation to be as important as key clinical outcomes (such as cardiovascular disease, infection or mortality) for indicating treatment success. Severity and immediacy of symptoms encompassed the debilitating impact of symptoms such as fatigue, which was identified as a key contributing factor to reduced life participation. Empowered for preparation and planning was about ensuring that patients were informed about the status of their membrane function, enabling them to be mentally and physically equipped to deal with potential PD failure. Demarcating distinct outcomes for clarity was suggested as participants recognized the conceptual overlap among outcomes, such as membrane function and PD failure. Participants also discussed the importance of the core outcome set to be measurable and feasible for implementation, including the need for simple, standardized and validated measures, particularly for life participation.

Conclusion

Patients, caregivers and health professionals supported the inclusion of PD failure, mortality, cardiovascular disease, PD-infection and the patient-reported outcome of life participation as core outcome domains for PD. Recommendations from this workshop will be integrated into the establishment of a core outcome set for use in trials and other research to ensure that research evidence can better inform decision-making.