How to assess quality of life in persons with chronic kidney disease

Chronic kidney disease (CKD) significantly impacts many aspects of life, health, and wellbeing. People with CKD have individual priorities for their care which may differ from those valued by clinicians and policy makers. The patient experience is broadly captured by the concept of quality of life (QoL) which is increasing assessed in research and used to guide clinical and policy decision making. Appropriate selection and application of QoL assessment tools are essential for high-quality research and patient care. This article summarises the current approaches to QoL assessment in CKD and outlines aspirations for future improvement.

Commonly used tools for assessment of QoL in CKD include the Short Form-36 and -12 and extended versions adapted for specific use in kidney patients (KD-QoL), and the EQ-5D. However, a wide range of other instruments are also reported, making comparisons between research findings challenging. Few of the tools are adequately validated for use in CKD, and relevance to patient values are unclear. Instruments suitable for use in a routine clinical setting are lacking.

QoL instruments developed and validated with meaningful CKD stakeholder input are required. The Standardised Outcomes in Nephrology initiative is working to address this need.