**1. Introduction**

68 Technical Problems in Patients on Hemodialysis

[161] Ethier, J., et al., *Vascular access use and outcomes: an international perspective from the* 

p. 3219-26.

*Dialysis Outcomes and Practice Patterns Study.* Nephrol Dial Transplant, 2008. 23(10):

In recent years the frequency of intra-dialytic symptoms has been decreasing, improving the patient well-being during treatment sessions. This has mainly been due to technical advances, such as more reliable monitoring devices, better water quality, physiological bicarbonate-based dialysate and machines to control ultrafiltration. Nowadays during hemodialysis (HD), patients suffer less from hypotension, cramps, headache, dizziness, nausea and vomiting (Himmelfarb & Ikizler, 2010; Al-Hilali et al., 2004). However, instead of well-being during dialysis, this chapter examines the well-being of patients between sessions, in their daily lives, focusing on how they perceive their quality of life (QOL). Unfortunately, technical advances in HD have not brought changes in the characteristics of renal replacement therapy: severe dietary restrictions, lost time, dependence on a machine, common occurrence of clinical complications and high mortality. Treatment of end-stage renal disease (ESRD) with HD is thus inherently distressing, causing social and family changes, and interferes profoundly in patients' well-being (Cukor et al., 2007; Tsutsui et al., 2009; Low et al., 2008).

ESRD treated with HD should be highlighted among other chronic diseases concerning its treatment, evolution and life consequences. Treatment depends not only on polypharmacy, but also on artificial replacement of kidney function by a machine – still a deficient method that cannot prevent various complications: ostheodystrophy, atherosclerotic disease and risk for infections. This inefficacious replacement of kidney function causes these patients to have a twenty-fold higher chance of death than in the general population (Parmar, 2002). HD patients must adhere to a very restricted diet with controlled ingestion of water. In conventional HD, the patient is submitted to sessions of dialysis for approximately four hours three times a week in a renal unit (plus the time spent commuting to and from the renal unit), a time loss that influences employment, leisure and relationships. It is not surprising, then, that ESRD treated with HD affects QOL more intensely than heart failure, diabetes, chronic lung disease, arthritis and cancer (Mittal et al., 2001).

Therefore dialytic therapy is associated with powerful stressors. The literature shows that successful adaptation to dialysis depends more on personal stress modulators than on objective treatment variables (Tsay et al., 2005; Curtin & Mapes, 2001). Personal modulators are mainly subjective, due to psychology, personality and behaviour (Cukor et al., 2007). These subjective factors cannot be discovered by traditional medical measures like physical signs, laboratory and radiological data. The assessment of these

Subjective Well-Being Measures of Hemodialysis Patients 71

disabilities can perceive life as a good experience, in contrast to patients with more favourable clinical conditions, who can perceive poor QOL (Riis et al., 2005). Reports of family members, friends and caregivers usually do not match patients' real perceptions. Most instruments used for subjective measures show results on scales of how patients perceive their lives (as opposed to years of life remaining), how they feel (irrespective of clinical condition), and the ways they cope (independent of peers' opinions). There are several kinds of subjective measures concerning overall well-being: spirituality, depressive feelings, quality of life, sexual satisfaction and ways of coping. All these subjective measures

Subjective measures have become important, first, because they can predict clinically relevant outcomes. Spirituality, depressive feelings and QOL are now extensively validated indicators of withdrawal from therapy, hospitalization and death among HD patients (Koenig, 2001; Powell et al., 2003; Spinale et al., 2008; Lopes et al., 2002; Lowrie et al., 2003; Knight et al., 2003; Mapes et al., 2003; Revuelta et al., 2004). For example, withdrawal is the cause of 25% of deaths among HD patients in the United States (Cohen et al., 2003). Second, and most important, these measures have not only been validated as indicators, they have become a main outcome in dialysis treatment. Despite technical advances in dialysis therapy, mortality is still very high, at 15-25% a year (United States Renal Data System, 2003). With such high mortality rates, objective measures only reveal whether patients are in the expected mortality range, without shedding any light on how their life quality and how to improve it. In this scenario of high and stationary mortality, subjective measures have become a main outcome. The chance of improving the patient's remaining life, however short it may be, is the most important end-point of dialysis therapy. Therefore, QOL issues are increasingly being included in studies on HD, such as The Netherlands Cooperative Study on the Adequacy of Dialysis (NECOSAD) and the North Thames Dialysis Study (NTDS), and in the principal guides to clinical practice in dialysis: the Dialysis Outcomes and Practice Patterns Study (DOPPS) and Reduction of Morbidity and Mortality among Hemodialysis Patients (HEMO). The National Kidney Foundation (NKF), through its guidelines published as a series named K/DOQI, now recommends routine monitoring QOL level in clinical attendance of HD patients (Merkus et al., 2000; NKF, 2006). Moreover, besides the importance of subjective measures in the nephrology area, today randomized clinical trials and studies of new drugs and treatments place the survival variable alongside QOL and patients' convenience and well-being. In the final analysis, then, health

professionals must increasingly pay attention to subjective measures.

available to measure patients' well-being to a reasonable degree of accuracy.

**2.1 The central role of quality of life** 

In summary, subjective measures cannot be estimated by observation by either health professionals or families, nor can they be revealed by physical signs or laboratory/radiological data. They depend entirely on patient reports. But many questions arise in formulating subjective measurement techniques: What is important to ask? How can feelings and perceptions be put on a quantitative scale? What elements comprise wellbeing? All these questions have been addressed in recent studies. Knowledge has increased, to the point where doctors in clinical settings, without the help of specialists, can call on many validated instruments covering various dimensions of feelings. In short, the tools are

Interest in QOL increased after the Second World War in the context of knowing how ownership of household appliances was influencing people's lives. However, in the medical

should play a central role in medicine.

subjective factors depends on patient reports. Health professionals have to know how patients are doing under dialysis if they want to offer better therapy. Growing awareness of this fact is reflected in the increasing number of randomized controlled trials and studies of new drugs and treatments that include patient-focused issues such as convenience, adherence difficulties, patients' feelings and preferences. How does my patient feel under dialysis? has become a central question.

It is a simple question. Indeed "how do you feel" is used in overall scores. But such a summary score does not comprise the complexity of well-being. Well-being comprises physical functioning, psychological aspects, social environment and spirituality. That is why validated instruments to measure QOL are so useful. They are multi-dimensional, comprising physical, psychological, emotional and social aspects affecting well-being. They are easy to administer and generate scores on a user-friendly numeric scale. This quantitative approach facilitates clinicians' interaction because they are accustomed to quantitative data. In summary, we need to be worried about well-being among HD patients, we already have reliable instruments to measure the main subjective variables involved in well-being, but health professionals trained in using subjective measures are lacking. The main objective of this chapter is to provide information about subjective measures in the area of dialysis.

This chapter first examines the subjective measures most used to assess the feelings of patients undergoing HD. The data are related to conventional HD (four-hour sessions three times a week). But the effects on patient well-being of other modalities (short daily or nightly dialysis) are also discussed. It also describes the main validated instruments to measure subjective aspects closely related to well-being, emphasizing QOL as a central measure. A complete list of instruments would be too exhausting, so it comments on those instruments which have provided relevant results in the field of ESRD and HD. It also presents data on recognized interactions of the type of variables associated with QOL, and whenever possible comments on my own results based on a characteristic sample from a renal unit located in a low-income area of Brazil. I think this sample is similar in many respects to all patients in the world, but with some particularities due to the area's prevailing socioeconomic status, which may be of interest to the reader. Finally, I express some personal views about how to improve QOL among HD patients. I believe opinions are still valuable in the present stage since there are no recommendations based on Level I or II evidence about interventions in order to improve QOL among dialysis patients.
