EQ-5D dans les unités de dialyse : un PROM avec une vue d’ensemble

Résumé

Résumé

L’insuffisance rénale chronique (IRC) est une épidémie mondiale silencieuse, responsable d’un lourd fardeau clinique et socio-économique. Au-delà des résultats liés à la maladie, il est urgent que les cliniciens mettent en œuvre des mesures validées des résultats rapportés par les patients (PROM) dans la pratique des soins de routine. Ce concept de soins rénaux de haute qualité implique un changement de paradigme, l’accent étant mis sur les expériences des patients et les mesures de la qualité de vie liée à la santé (QVLS). Ceci est encore plus crucial dans l’insuffisance rénale terminale, où une dialyse adéquate doit viser une approche multidimensionnelle au lieu de se limiter à des objectifs analytiques. Il est essentiel de mettre l’accent sur les interventions qui ont un effet positif sur la qualité de vie des patients atteints d’IRC, au-delà de l’amélioration de leur survie. Bien que l’importance  des mesures de la QVLS soit bien établie, il y a eu une résistance à leur utilisation en pratique Il existe de nombreux outils pour évaluer la QVLS, mais tous ne sont pas faciles à appliquer. Il est essentiel de surmonter ces barrières et de mieux adapter les outils QVLS aux patients. Les instruments plus courts et plus simples sont plus attrayants, de même que les questionnaires de santé électroniques. L’outil EuroQol-5 Dimensions (EQ5D) est une mesure standardisée de l’état de santé, simple et rapide, et fournit des informations qui peuvent être utilisées dans les évaluations économiques des soins de santé.
Dans les unités de dialyse, la gestion de la durabilité devrait inclure un parcours de soins intégrés, incluant la dialyse à domicile et en centre, qui valorise une meilleure adaptation des prescriptions à chaque patient. Les auteurs préconisent l’utilisation de l’EQ5D pour soutenir ce parcours de qualité dans les unités de dialyse vers des gains de santé globale. L’EQ5D est un PROM dont la vision est centrée sur le patient et des services de santé durables.

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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