PATIENT REPORTED OUTCOME MEASURES FOR LIFE PARTICIPATION IN PATIENTS WITH CHRONIC KIDNEY DISEASE: A SYSTEMATIC REVIEW
Anastasia Hughes1,2, ALLISON JAURE1,2, ANGELA JU1,2 1The University Of Sydney, Camperdown, NSW, Australia2The Centre for Kidney Research, Westmead, NSW, Australia
Abstract
Patient Reported Outcome Measures for Life Participation in Patients with Chronic Kidney Disease: A Systematic Review
Aim: To determine the patient reported outcome measures used to measure life participation in chronic kidney disease (CKD) prior to dialysis.
Background: CKD along with its treatment is a burdensome condition often limiting the ability to participate in daily activities including family, work, sport, and recreational activities. Life participation is important to patients and their families, however the validity and appropriateness of available measures used to assess this outcome are uncertain. The aim of this study was to identify characteristics, content, and psychometric properties of existing measures for life participation used in patients with CKD.
Methods: We searched MEDLINE, Embase, PsycINFO, and CINAHL from inception to February 2023 for all studies that reported fatigue in patients with CKD. The characteristics, dimensions of life participation and psychometric properties of these measure were extracted and analysed.
Results: Preliminary results have identified 78 studies reporting life participation in patients with CKD to be included in the final analysis. From the 78 studies included, 39 different measures were used to assess life participation. The SF-36 and IADL were the most frequently used measures [20 (26%) and 9 (12%) studies, respectively].
Conclusion: Patient-reported outcome measures for fatigue vary in validity and content. There is limited validated measures specific to fatigue with measures often being proxy measures. The measures found are inconsistently used to measure fatigue, an identified core outcome for CKD. A validated, standardised, psychometrically robust measure for fatigue in CKD is needed to accurately and meaningful assess the impact and improve outcomes in CKD.
Biography
Anastasia is a Research Assistant and Patient Engagement Officer at the University of Sydney. She has completed a Bachelor of Public Health (Social Epidemiology). Anastasia has an interest in chronic kidney disease, improving outcomes, health literacy, and access to healthcare, particularly in rural and remote, and Aboriginal and Torres Strait Islander communities.