This is the first part of a two part series. Read part two here.
In the 1960s when dialysis was introduced as a treatment option for chronic kidney disease, there were two basic means of measuring dialysis treatment quality: morbidity and mortality. In plain language, how long could someone stay out of the hospital and how long before he or she kicked the bucket.
These two measures were the most important metrics of success for treating people on dialysis. For many professionals they are still the gold standard of measuring the efficacy of dialysis care. Others, particularly those directly impacted by kidney disease, might say these measures are a pretty narrow way of gauging the lives and wellbeing of our fellow human beings.
Survival is a basic human need. Hospitalization to ensure survival is a basic human need. Those who are familiar with Maslow’s hierarchy of needs (1) will notice how these measures belong to the bottom tier of the Maslow Pyramid.
In the 1990s, doctors started realizing that there had to be a better and more humane way of assessing dialysis treatment adequacy. As a result, the body of literature regarding the impact of quality of life (QOL) expanded.
A lot of questions on the subject emerge from this period. What constitutes quality of life? How is it measured? What aspects of life should be included? What methods should be used? What is the validity and reliability of these measures? Is it even measurable? Is it an individual measure, or can it be applied to populations?
While the goal of developing QOL metrics and scales is noble, none of the tools truly encompass the multidimensional concept of how to live fulfilling lives. Human beings are extremely complex creatures. What is important to one individual might carry little significance to another. Trying to categorize what makes up the good life for a broad group of people may turn out to be too daunting a task to figure out. It might be that the best measures will only be inadequate approximations resulting in endless discussions whether these approximations are good enough.
Health related QOL scales only ever measure the impact of disease on certain characteristics of people’s lives. All characteristics fall in the bottom two tiers of the hierarchy of needs with most of them having to do with physiological rather than social or personal needs.
In November 2014, an article by Dr. Veena Joshi appeared in World Journal of Nephrology. It was a review of the scientific literature written between 1990 and 2014 on QOL in people with CKD. 65 articles were assessed.
The conclusions are the following:
Most of what treatment teams are focusing on have little significance to the patient. Only in the rarest of instances are the values that mean the most to QOL in kidney patients looked at. And too often the wrong instruments are used in doing so.
Virtually all the things a treatment team typically will focus on; lab results; Kt/V; biomarkers, such as electrolyte status, hemoglobin etc. are found to have “little or no association with QOL”
Dr. Joshi finds self-efficacy; influence on dialysis care practice; treatment satisfaction; different types of counseling and rehabilitation interventions to have a positive association with QOL. While depression; worry; anxiety; sleep disorders; poor education and a number of other non-clinical variables have a negative association with QOL.
Joshi identifies that what matters most to people with CKD are things belonging to the three upper tiers of the hierarchy of needs, when it comes to having a measurably positive effect or a negative effect.
Psychosocial wellbeing of people with CKD seems to have fallen behind other fields of medicine. There may be a number of QOL instruments and scales, but in most instances the tools claiming to assess QOL are nothing but fancy ways of measuring morbidity and mortality. Most QOL tools focus directly on how disease interferes with people’s lives – from a physiological and safety point of view – ignoring the aspects that really matter to the person with CKD.
While the psychosocial aspects of cancer, diabetes and many other illnesses are acknowledged and researched, it still seems difficult to provide even adequate basic treatment for dialysis patients – let alone determine how they are faring on said treatment.
The article by Joshi points out that the lab results, biomarkers and dialysis adequacy so diligently measured and documented by treatment teams, for the most part have very little or no impact on true QOL. They have only prompted a slight improvement in measuring morbidity and mortality rates and are poor indicators of psychosocial health in people with CKD.
Joshi’s article ought to be a landmark study. Unfortunately it was published in an obscure journal by a single author so it will most likely be ignored by most. It deserves to be the foundation for a whole new view on dialysis care. It makes us aware how treatment teams have too narrow a concept of true patient care.
(1) Maslow, A. (1954). Motivation and personality. New York, NY: Harper.
(2) Quality of life in end stage renal disease patients. Joshi, VD. World J Nephrol 2014 November 6; 3(4): 308-316 (the full article is available for free)