EQ-5D in dialysis units: a PROM with a view

Abstract

Summary

Chronic kidney disease (CKD) is a silent worldwide epidemic responsible for a high clinical and socioeconomic burden. Beyond disease-related outcomes, there is an urgent need for clinicians to focus on implementation of validated patient-reported outcome measures (PROMs) in routine care practice. This updated concept of high-quality renal care implies a changing paradigm, with a focus on patient experiences and health-related quality of life (HRQL) measures. This is even more crucial in end-stage renal disease, where adequate dialysis should aim at a multidimensional approach instead of only analytical targets. It is vital to emphasize interventions that positively affect the quality of life of the patient with CKD beyond improving their survival. Although the importance of using HRQL measures is well established, there has been resistance to their use in routine care. There are numerous tools to assess HRQL, but not all are easy to apply. It is essential to overcome these possible barriers and better adequate the HRQL tools to the patients. The shorter and simpler instruments are more appealing, as well as the electronic health questionnaires. The EuroQol-5 Dimensions tool (EQ5D) is a standardized measure of health status, is simple and quick, and provides information that can be used in economic assessments of healthcare.
In this era of limited health resources, cost analysis and economic evaluations are becoming increasingly relevant. In dialysis units, sustainability management should include a pathway of integrated care, including home and center dialysis, that values the better adjustment of prescriptions to the individual patient. The authors advocate using the EQ5D to support this pathway of quality in dialysis units toward global health gains. The EQ5D is a PROM with a view centered on patient and sustainable health services.

Update concept of quality in dialysis units

Globally, an estimated 5-10 million people die every year from chronic kidney disease (CKD) in the world and this silent epidemic, with high clinical and socioeconomic burden needs awareness and plan of actions¹. There has been an effort form the European Kidney Health Alliance to promote innovation and complementary tools in kidney replacement therapy, especially in home-dialysis treatments, to increase patient’s autonomy and empowerment². However, a paradigm shift will not be possible without policy measures. In Portugal, the incidence and prevalence of CKD have been increasing steadily to the point that it is the second European country with the highest incidence of renal replacement therapy¹;³;⁴. This irreversible illness progressively erodes the patients’ health and quality of life (QoL) and it is essential to identify and address patient priorities, values and goals. Ensuring that renal patients have the opportunity to discuss their preferences and have a positive experience of care is vital in a high‑quality service⁵. Unfortunately, quality statements on patient experience are not usually included in topic‑specific quality standards.

Quality parameters in dialysis units are mainly focused on serum levels of hemoglobin, phosphate, Kt/V urea, etc., which are clinically relevant, and should be kept under scrutiny, but lag behind the goals of patient rehabilitation in chronic treatments.

An update concept of adequate dialysis implies a changing paradigm, with focus on patient experiences, and health related quality of life measures (HRQL) in the circuit of CKD, beyond analytical targets. These dimensions of adequacy are increasingly prioritized by the patients and should be taken into account by clinicians and stake holders⁶;⁷.

Although in the last decade there has been an increasing awareness of patient-centered outcomes and patient-centered wellness, it is urgent to focus on the development and implementation of validated patient-reported outcome measures [PROMs) in routine care to achieve the ultimate goal of living well with kidney disease. Some countries are currently trying to integrate PROMs in daily routine care, like the Edmonton Symptom Assessment System Revised, in Canada⁸or even in France where the French Society of Nephrology, Dialysis and Transplant recommended the use of EQ5D and 12-Item Short Form Health Survey for outcome measures and e-Satis national public system for measuring patient satisfaction⁹;¹⁰.

HRQL measures and EQ5D

Better QoL is the ultimate goal of treatments and the methods of its measurement have evolved, not only in the clinical field, but also in research and health policy. HRQL measures are commonly use in clinical trials, as it provides useful information for healthcare providers about the added value of a certain treatment. In routine care, we frequently aim for laboratory results to evaluate the effectiveness of our treatment. However, measuring HRQL provide a multi-dimensional (physical, psychological, functional, and social) perspective of patient health status and give us the real efficiency of the current treatment. This is especially important in chronic diseases, where is expected prolonged treatments and, consequently a more impact in the patient’s QoL. Besides, the association between lower HRQL and hard outcomes is well-documented. As reported by the Dialysis Outcomes and Practice Patterns Study (DOPPS) study, HRQL strongly associated with higher risk of death and hospitalization in dialysis patients, even when considering serum albumin concentration and other risk factors¹¹. In addition, treatment adherence may also be negatively influenced by a lower HRQL¹².

Several studies of HRQL have been conducted in CKD patients and all showed a poorer QoL when compared to general population¹³;¹⁴;¹⁵. Moreover, dialysis is associated with a significant decrement in QoL compared to kidney transplantation¹⁶. Regarding different dialysis techniques, the studies comparing HRQL are not unanimous. Some reported that peritoneal dialysis (PD) seems superior to hemodialysis (HD) when considering occupational status, patient satisfaction, and dialysis staff encouragement¹⁷;¹⁸; other studies showed no statistically significant differences¹⁹. Nevertheless, a 2020 systematic review and meta-analysis reported better results for PD regarding generic HRQL and even for specific subdomains such physical functioning, limitations due to emotional problems and burden of kidney disease²⁰.. Interestedly, a study focused on utility-based QoL found that HD had a clinically lower mean utility estimate than PD²¹. Within PD patients on automated peritoneal dialysis seem to have a significantly higher mean utility than those on continuous ambulatory peritoneal dialysis¹⁶. These results provide evidence-based utility that could be applied in economic evaluations of renal replacement therapies, useful for policy makers and in individual treatment discussions with CKD patients.

Currently, there are numerous tools to assess HRQL, some are generic like the Karnofsky Index²²or EQ5D²³; and other are more specific to CKD patients: Kidney Disease Quality of Life Instrument -SF²⁴;²⁵or the Kidney Disease Questionnaire²⁶. Although these are more focused on the CKD population, they could be complex and time-consuming to apply in routine care. Most importantly, we should consider instruments that can be used to inform economic evaluations in healthcare interventions. This is one of the benefits of EQ5D since it facilitates the calculation of quality-adjusted life years (QALY).

The EQ5D is a standardized measure of health status developed by the EuroQol Group to provide a simple, generic measure of health for clinical and economic appraisal²⁷. It

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