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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: We identified 114 studies reporting life participation in patients with CKD. From the 114 studies included, 39 different measures were used to assess life participation, of which three were author developed measures. The 36-Item Short Form Health Survey (SF-36) and Kidney Disease Quality of Life – Short Form (KDQOL-SF) were the most frequently used measures [39 and 24 studies, respectively]. There were various content measured assessed including obligatory and non-obligatory activities including physical activities (walking, running, and sports), social activities, leisure activities, work or study and self-care. There were six measures developed specifically for CKD.
Conclusion: Life participation is a critically important outcome for patients with CKD as it addresses the impact of CKD on their ability to take part in activities that are important to them as well as general tasks of everyday life. Patient-reported outcome measures for life participation vary in validity and content. There is limited validated measures specific to life participation with measures often being proxy measures.
This study is a part of the Standardised Outcomes in Nephrology – Chronic Kidney Disease Initiative. Future work will include establishing a core outcome measure for life participation in patients with CKD not requiring dialysis. This will involve a consensus workshop with patients, caregivers and health professionals with the aim to establish a new and appropriate measure. There will be an English and Spanish speaking workshop.
In addition, validation will be undertaken to ensure reliability and validity in patients with CKD. It will also be important to ensure the measure is accurately translated and adapted for use in different cultural context.
Establishing a standardised and validated measure for life participation in CKD alongside patients, caregivers and health professionals is crucial to ensure the important and relevant outcome of patients, caregivers and health professionals are meaningfully, consistently, and assessed. The measure will improve the evaluation of life participation. More reporting of life participation will increase the understanding of patient perspective regarding the impact of CKD on life participation. It will then create an opportunity to develop interventions to enhance patients’ ability to adequately participate in activities of daily living.