ESTABLISHING A CORE OUTCOME FOR LIFE PARTICIPATION IN PATIENTS WITH CHRONIC KIDNEY DISEASE NOT REQUIRING KIDNEY REPLACEMENT THERAPY: A STANDARDISED OUTCOMES IN NEPHROLOGY – CHRONIC KIDNEY DISEASE (SONG-CKD) CONSENSUS WORKSHOP REPORT
Ms Anastasia Hughes1,2, Ms Andrea Matus-Gonzalez1,2, Professor Adeera Levin3, Professor Allison Jaure1,2
1The University Of Sydney, Australia, 2The Centre for Kidney Research, Westmead, Australia, 3Division of Nephrology, University of British Columbia, Vancouver, Canada
Aim: To establish a core outcome measure for life participation in patients with chronic kidney disease (CKD) not requiring kidney replacement therapy (KRT).
Background: Life participation has been identified as an outcome of critical importance to patients with CKD not requiring KRT, their caregivers and health professionals. However, there is no validated instrument for measuring life participation for patients with CKD.
Methods: An online (English language) and in-person (Spanish language) consensus workshops were held to identify characteristics of life participation, with the aim to establish a patient-reported outcome measure to be incorporated in all trials. Transcripts were analysed thematically.
Results: 137 participants, including 80 patients and caregivers, and 57 health professionals from 20 countries attended. Three themes were identified. Ensuring comprehensive relevance and interpretability (limitations of life participation, variability and ambiguity of life participation) to acknowledge that life participation should be interpreted according to the individual’s context and priorities, including cultural considerations (e.g. family responsibilities, recreation, varying elements of ‘work’ and activities existing as both obligatory and non-obligatory). Maximising feasibility for implementation (minimising burden, encouraging uptake in trials) included ensuring that the PROM is minimally burdensome for patients and researchers (e.g. reducing completion time, easily administered) whilst being validated and meaningful. Improving life participation (prioritising life participation, providing life participation interventions) to empower and encourage patients to maintain involvement in their daily and social activities.
Conclusion: There is a need for a reliable, validated and generalisable measure for life participation in patients with CKD. Feasibility (completion time and delivery methods) are important to consider to ensure the patient-reported outcome measure will be included in all trials that include patients with CKD.
Biography:
I have an interest in public health and health promotion, with the aim of improving health literacy and health outcomes by promoting initiatives to all demographics. Achieving this through addressing and reducing health inequalities and inequities. I have a particular interest in kidney disease, patient-reported outcomes, core outcomes, AOD particularly e-cigarettes and alcohol, rural and remote health, Aboriginal and Torres Strait Islander health, and chronic diseases.