Health-Related Quality of Life in End-Stage Renal Disease Patients: How Often Should We Ask and What Do We Do with the Answer?

Abstract

Background: End-stage renal disease (ESRD) patients have poor health-related quality of life (HRQOL) comparing to general population and comparable HRQOL to patients with other major chronic diseases. Poor HRQOL is associated with shorter survival. There is a limited threshold to which dialysis dose and parameters management can improve HRQOL in ESRD patients. Numerous studies have sought to find interventions to improve HRQOL. This article is to review the symptoms associated with poor HRQOL and how frequent the quality of life (QOL) should be evaluated to improve the outcome. Summary: It is required by the Center for Medicare and Medicaid Services to evaluate HRQOL of dialysis patients annually. KDIGO recommends the symptoms to be assessed regularly and the treatment is redirected toward a patient-centered care model. Studies have shown that measuring patient-reported outcomes frequently, from 4 times a day to every 3-6 months, without intervention did not improve the HRQOL significantly. Appropriate intervention of the symptoms may improve the quality of life (QOL). Studies in oncology have also showed a similar result. The commonly used tools to evaluate the HRQOL in dialysis patients take up to 30 min for completion. Therefore, frequent assessment of all the symptoms can provide more burden than benefit to the patients. In addition to the annual HRQOL measurements, more frequent evaluation of targeted symptoms can be helpful. For appropriate intervention of the symptoms, effective communication between providers, as well as a multidisciplinary approach, is essential to improve HRQOL and outcomes in dialysis patients. Key Messages: Measurement of patient-reported outcomes may provide an opportunity to improve outcomes in ESRD. The frequent measurement of symptoms and QOL may be burdensome. Consider targeted measurement of symptoms to complement HRQOL measurement. Improved communication and the use of a multidisciplinary team provide mechanisms to improve HRQOL in ESRD.

Prevalence and Persistence of Uremic Symptoms in Incident Dialysis Patients

“…Both instruments have been validated, and the KDQOL has emerged as the most widely used tool for healthrelated quality of life assessment in the nephrology literature. In fact, the KDQOL is administered annually to patients on dialysis in the United States to meet the requirements of the Center for Medicare and Medicaid Services for incorporating assessment of health-related quality of life into ESKD care (28).…”

Adapting wellbeing research tools for Aboriginal and Torres Strait Islander people with chronic kidney disease

“…In recognition of the burden of symptoms accompanying end stage kidney disease, patient experience measures are under development internationally to inform patient care needs and clinical quality measures [30]. We have demonstrated that Western understanding of ESRD symptoms differ from Aboriginal peoples understanding of symptoms, but we have enabled a validation of Aboriginal-reported experience and symptom measures and scoring of measures in this study.…”

Are There Inequities in Treatment of End-Stage Renal Disease in Sweden? A Longitudinal Register-Based Study on Socioeconomic Status-Related Access to Kidney Transplantation

“…Patients with End-Stage Renal Disease (ESRD) face many challenges, including increased burden of comorbidities, reduced life expectancy and impaired quality of life, compared to general population [1,2]. Renal Replacement Therapy (RRT) are lifesaving treatments which include dialysis and kidney transplantation.…”