Chronic kidney disease (CKD) stage 5 [also known as end-stage renal disease (ESRD)] can take a toll in the quality of life (QOL) an individual. As with any other chronic illnesses, the goal of the medical management is to ensure that CKD patients get quality life despite their condition.
For healthcare professionals in the dialysis industry, it is important to recognize the importance of keeping track of the QOL of clients under our care. While quantitative measurements such as an optimum laboratory test result or an efficient dialysis adequacy rate can provide a peek on the effectiveness of the medical management, it does not reflect the overall health, much less, the quality of life of an individual.
Defining quality of life
To better understand QOL in the context of patients undergoing dialysis, it is important to define what life means. Based on the American Heritage Dictionary, life is the physical, emotional, mental, and spiritual experiences that comprise the existence of an individual. Meanwhile, the World Health Organization defines QOL as “an individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person’s physical health, psychological state, level of independence, social relationships, personal beliefs and their relationship to salient features of their environment.”
Others terms that are often equated with QOL include sense of well-being, functional status, health status, and life satisfaction. These terms, however, are never synonymous with QOL but are just mere components of a quality life.
In the management of CKD, as well as other chronic illnesses, a multidisciplinary approach is undertaken to address all the various aspects of life. As a healthcare professional, you may be aware of the numerous and complex stressors that confront our patients. All these aspects have an effect in the global health of the person. It is difficult, even impossible, to measure an CKD patient’s global health based only on conventional health metrics such as protein catabolic rate (PCR) or Kt/V. Some may even consider health status based only on one primary endpoint, such as attaining normal blood pressure, which completely rejects and misses out on the other equally significant aspects of health.
Quality of life measurement
The WHO has advocated the use of HRQOL (Healthcare Related Quality of Life) tools especially in the treatment of chronic illnesses. It is one of the most important components in the care of patients but sadly this aspect is often overlooked in the management of CKD patients. As compared with other chronic illnesses, the use of these measurement tools in individuals with CKD is highly recommended, due to the numerous and complex comorbid conditions associated with CKD.
These measuring tools are either subjective or objective, and are used to evaluate the global health and well-being of an individual. Check with your dialysis facility if there is an established HRQOL measuring tools. Usually, these tools use scoring systems that are disease targeted, with appropriate control populations. Some HRQOL tools incorporate other aspects like the Beck depression inventory, Sickness Impact Profiles, Karnofsky index, Illness Effects Questionnaire, SF-36 health survey and others. These measuring tools may vary per facility.
Importance of HRQOL assessment
Apart from ensuring an optimum level of wellness, the HRQOL is closely related to the mortality and morbidity of patients with CKD. Evaluating HRQOL is also helpful in making crucial decisions in the medical management of an ESRD patient. It helps in assessing the impact of interventions, increasing patient satisfaction, and increasing patient’s compliance and participation to their medical management. For instance, when deciding whether an individual would benefit more by submitting into a new procedure or medication the effects on the quality of life must be a primordial concern. The clinician must weigh between decreasing mortality and possible effects on the life of the individual.
HRQOL is enhanced by addressing most common issues of ESRD patients such as malnutrition, pre-dialysis care, inactivity, anemia and social support systems. An optimum quality of life has been linked with improve survival rates. The nephrology healthcare team should focus their strategies aimed at these components and in preserving remaining renal function, controlling blood pressure, and ensuring dialysis adequacy. All these can help improve the outcome of the patient and the quality of his life. In the near future, more advanced medical technologies can help improve mechanisms and strategies for improving HRQOL.
At present, all members of the nephrology team must work with patients closely to better improve their quality of life. The use of validated measuring tools can better upgrade the holistic wellbeing of patients suffering from ESRD.