Why does quality of life remain an under-investigated issue in chronic kidney disease and why is it rarely set as an outcome measure in trials in this population?

Abstract

The growing importance of quality of life (QoL) measures in health care is reflected by the increased volume and rigor of published research on this topic. The ability to measure and assess patients' experience of symptoms and functions has transformed the development of disease treatments and interventions. However, QoL remains an under-investigated issue in chronic kidney disease (CKD) and is seldom set as an outcome measure in trials in this population. In this article, we present various challenges in using patient-reported outcome (PRO) end points in CKD trials. We outline the need for additional research to examine more closely patient experiences with specific kidney disease symptoms and conditions, as well as caregiver perspectives of patients' symptom burden and end-of-life experiences. These efforts will better guide the development or enhancement of PRO instruments that can be used in clinical trials to more effectively assess treatment benefit, and improve therapy and care. Better understanding of health-related QoL issues would enable providers to deliver more patient-centered care and improve the overall well-being of patients. Even small improvements in QoL could have a large impact on the population's overall health and disease burden.

Development and usability testing of an electronic patient-reported outcome measure (ePROM) system for patients with advanced chronic kidney disease

“…[26,27] They may also experience a number of debilitating CKD-related symptoms such as fatigue and cognitive impairment which could significantly affect their ability to use an ePROM system. [28,29] These age and health-related issues need to be taken into account when designing and testing an ePROM system for this patient group. It is also crucial that patients iteratively [30] assess the usability of the system so that…”

A Timely Evaluation of the Psychometric Properties of the KDQOL-36

“…P atient-reported outcome (PRO) is a broad term used to describe data collected from the patient without interpretation by clinicians or anyone else and includes health-related quality of life (HRQoL). 2,3 This information from patients may reflect their feelings of satisfaction or distress, as well as their level of functioning. During the past several decades, we have witnessed considerable progress in tool development to measure PROs for all types of patients, including patients receiving dialysis.…”

Impact of superimposed nephrological care to guidelines-directed management by primary care physicians of patients with stable chronic kidney disease: a randomized controlled trial

“…Quality of life (QoL) has not been extensively studied in CKD patients and there is a scarcity of longitudinal studies investigating the change of QoL over the time course of CKD [27]. Lately, QoL was found to be associated in CKD patients with shorter and also long durations of sleep, which could impact notoriously CKD progression [28].…”