Abstract: SA-PO029
Establishing a Core Outcome Measure for Life Participation: A Standardized Outcomes in Nephrology – Kidney Transplantation (SONG-Tx) Consensus Workshop Report
Session Information
- Transplantation: Clinical Outcomes
October 27, 2018 | Location: Exhibit Hall, San Diego Convention Center
Abstract Time: 10:00 AM - 12:00 PM
Category: Transplantation
- 1802 Transplantation: Clinical
Authors
- Ju, Angela, The University of Sydneyd, Sydney, New South Wales, Australia
- Josephson, Michelle A., University of Chicago, Chicago, Illinois, United States
- Fowler, Kevin John, Kidney Health Initiative, Elmhurst, Illinois, United States
- Craig, Jonathan C., University of Sydney/Children's Hospital, Sydney, New South Wales, Australia
- Howell, Martin, University of Sydney, School of Public Health, Sydney, New South Wales, Australia
- Tong, Allison, The University of Sydney, Seven Hills, New South Wales, Australia
Background
Kidney transplantation confers substantial survival and quality of life benefits for many patients with end-stage kidney disease compared with dialysis but complications and side effects of immunosuppression can impair participation in daily life activities. Life participation is a critically important patient-reported outcome for kidney transplant recipients but it is inconsistently and infrequently measured in trials. We convened a consensus workshop on establishing a core outcome measure for life participation for use in all trials in kidney transplantation.
Methods
Twenty-five (43%) kidney transplant recipients/caregivers and 33 (57%) health professionals from eight countries participated in six facilitated breakout group discussions. Transcripts were analyzed thematically
Results
Four themes were identified. Returning to normality conveyed the patients’ goals to fulfil their given roles (i.e. in their family, work, and community) and re-establish a normal lifestyle. Recognizing the diverse meaning and activities of ‘life’ explicitly acknowledged life participation as a subjective concept that could refer to different activities (e.g. employment, recreation, family duties) for each individual patient. Capturing vulnerability and fluctuations post-transplant (e.g. due to complications and side-effects) distinguished between experiences in the first year post-transplant and the long-term impact of transplantation. Having a scientifically rigorous, feasible and meaningful measure was expected to enable consistent and frequent assessment of life participation in trials in kidney transplantation.
Conclusion
A feasible and validated core outcome measure for life participation is needed so this high-priority patient-reported outcome can be consistently and meaningfully assessed in trials in kidney transplantation to inform decision-making and care of patients.