Outcomes Assessment in End - Stage Kidney Disease - Measurements and Applications in Clinical Practice

End - stage kidney disease (ESKD) is characterized by deterioration of renal function, which ends fatally in uremia, and this is detected by multisystem manifestations. The present book evaluates the state of the science in end - stage kidney disease outcomes assessment and offers perspectives on what is required to advance the field. The chapters collectively cover a diverse set of topics, which are examined in a sequence suggested by the broad section heading below. Developed as stand - alone documents, the chapters can be read in any order. Each chapter presents a number of findings and the previews below provide only a favor of the full range of results.

Healthcare in the 21^st century has moved from a disease-centred perspective to a patient-centred one, in which the concept of quality of life plays a crucial role. Nowadays, with an ageing population throughout most of the world and an increased life expectancy, there is a large number of individuals living with physical and/or mental chronic illnesses/disabilities. Therefore, the focus of medicine has shifted towards the quality of survival, and not only on the mere length of life. For these reasons health - related quality of life (HRQoL) has become an important field of study in medical care. The present work focuses on the definitions and domains regarding HRQoL. But defining what quality of life is involves also ethical considerations: when decisions about severely ill or disabled patients need to be taken, having a clear idea of what a good/bad quality of life is becomes essential. Clinicians and researchers in the health care should be aware of the importance of HRQoL and its implications. Indeed the concept of HRQoL allows professional caregivers to understand the patient’s evaluations and perceptions of his/her illness/disability and of the related treatments. Moreover it allows comparisons among different interventions and their respective effectiveness.

Chronic kidney disease (CKD) has detrimental effects on patient’s quality of life. Regarding this multidimensional concept, the correlations between assessment of quality of life, morbidity and mortality for this population indicate the measures’ necessity. The Health Related Quality of Life (HRQoL) is a multidimensional approach that has been proposed as a way to achieve a more holistic assessment for the level of QoL in patients with CKD. Two dimensions have been included: the ‘Generic’ and the ‘disease - targeted’ multidimensional HRQoL questionnaires. Morever, selection criteria for the appropriate instrument are discussed identifying thus the utility of practicality, shortness and adaptability to CKD patients. This chapter provides specially the minimum requirements that any instrument of quality of life should meet in order to be functional in the everyday clinical practice. On the other hand, researchers in contrast to clinicians are focused mainly on generic or specific measures with high validity and reproducibility. Finally in this chapter, various interventions with proven effect in HRQoL are discussed, such as exercise and congitive behaviour therapy that may influence the psychosocial status in CKD patients affecting among others their daily function, the ability to sustain social networks and the overall mental and physical health.

More patients with end-stage kidney disease (ESKD) are becoming increasingly dependent on lifelong dialysis as their only means of renal replacement therapy. However, despite the improvements in dialysis techniques/procedures and care, there are still high mortality rates, which are significantly predicted by a lowered quality of life (QoL). This chapter, therefore, addresses QoL issues in ESKD. We first explore the various issues surrounding QoL in dialysis research. We then briefly review the empirical findings and limitations in this area. We end by proposing applications of QoL research in clinical settings, and examine empirical research that might potentially assist patients with decision-making for different treatment modalities.

Transplanted patients generally experience lower health related quality of life (HRQoL) compared to general population. The vast majority of studies evaluating quality of life of patients before and after renal transplantation are in favour of transplanted patients. Immunosuppressive treatment side effects seem to have a negative impact on patients’ HRQoL. Nevertheless, HRQoL is generally significantly improved in children, adolescents and adults alike. Further more, living kidney transplant donors seem to present better HRQoL and improved depression status after a successful kidney transplantation. Even when older living donors are carefully selected, there is no need to be excluded from transplantation screening programs. Kidney transplantation represents the only known definite treatment of end - stage kidney disease (ESKD). When carefully planned and performed it will lead to both improved survival and health related quality of life of patients with advanced chronic kidney disease.

Kidney failure is believed to have a negative impact on cognitive function, and cognitive impairment is common in people with chronic kidney disease and end - stage kidney disease (ESKD). Diagnosis of cognitive impairment in this population of patients is important because cognitive impairment may have a role in the patient’s understanding and acceptance of ESKD care, both at the initiation and duration of kidney replacement therapy. The pathophysiology of cognitive impairment is uncertain; it is a complex and probably multifactorial process. It is not known whether cognitive impairment is mediated by direct toxic effects of uraemia per se, or is attributed to a high prevalence of predisposing risk factors among ESKD patients and side effects of dialysis treatment. Recent studies noted that cognitive impairment in patients with end stage renal disease is likely to improve with successful kidney transplantation and that early beneficial effects of kidney transplantation on cognitive function are not transient and were still evident one year following successful kidney transplantation.On the other hand, some cognitive limitations may still be present in kidney transplant recipients and cognitive impairment in kidney transplant recipients may impact decision-making as well the ability to adhere to transplantation recommendations, such as dietary modification and complex medication compliance. Delay in diagnosis and treatment of cognitive impairment may result in medication non adherence and subsequent severe adverse effects such as acute graft rejection. Periodic assessment of end stage renal disease patient’s cognitive function prior and post transplantation should be one of the parameters to be considered on evaluating outcomes after kidney transplantation.

Patient non-adherence is a pertinent issue as it induces adverse disease outcomes, poor prognosis, and diminished quality of life. Concerns for non-adherence are further pronounced in End-Stage Kidney Disease (ESKD) patients as treatment is highly complex and demanding with dialysis sessions, multiple medications, and lifestyle restrictions related to dietary and fluid management. Summarising literature on adherence in dialysis patients, this chapter starts by introducing the treatment rationale and regime for ESKD patients undergoing dialysis, followed by a delineation of relevant measures and criteria related to, and rates of non-adherence. An assortment of methods is being used to assess adherence rates in dialysis patients, among which the examining of biochemical markers and patient self-report are the most prevalent. Rates of non-adherence in dialysis patients warrant urgent attention as they can be as high as 18% for missed dialysis sessions, 22.4% for shortened treatment time, 80.4% for medication, 75.3% for fluid restrictions and 81.4% for dietary restrictions. There is a disproportionate emphasis on haemodialysis over peritoneal patients. Paramount to drive efforts to improve treatment adherence in this patient population, demographic, clinical and psychosocial determinants of non-adherence are also highlighted. This chapter concludes with a brief overview on educational and psycho-educational interventions used to improve treatment adherence in patients undergoing dialysis.

Hemodialysis involves a complex regimen involving adherence to treatment, fluid, medication and diet prescriptions. Studies examining adherence to treatment, fluid, medication and diet prescriptions in adult hemodialysis patients from 2007 to May 2012 were reviewed and results presented. Eleven studies (two randomized controlled trial and nine quasi-experimental studies) were identified attempting to enhance hemodialysis adherence. A randomized controlled trial study design with a large, diverse nonadherent sample testing a theory-based intervention delivered by multi-disciplinary teams address the system in which the patient functions may enhance adherence to treatment, fluid, medication and diet adherence.

Patients with end-stage kideny disease (ESKD) and their caregivers follow a rigorous program for the needs of treatment with daily restrictions and significant impact on their lifestyle. In this process, psychosocial factors (educational level, economic status, family, supportive environment) are involved, that interact with each other, influencing the subjective experience of disease, while they hinder or facilitate the adjustment of the individual to the new conditions. Caregivers are usually family members who agree to give systematic priority to the patient’s needs, neglecting their own, thus becoming vulnerable. Caregivers carry an increased psychological burden, and are often prone to stress, anxiety and depression, and their health appears to be compromised. Studies conducted so far show that caregivers of dialysis patients experience isolation have diminished confidence and express exhaustion, and generally have low quality of life. Nevertheless, there are mixed results regarding the extent and severity of impact on their lives and health. Researchers seem to agree that the most important factor affecting caregivers is the patient’s health status. The role of caregivers is often invisible and not recognized. To enable caregivers to cope with the burden borne, support services in the form of consultancy, training, social care or home care, where appropriate, should be obtained.

In this chapter, we address the relationship between loss and grief that renal nurses experience and stress management. Renal nurses provide care across the life span and health continuum, including acute and chronic care to patients with kidney disease. They are involved in health promotion, illness prevention, the management of acute, chronic and terminally ill care and rehabilitation. The nurses also have to deal with sudden or unexpected death. The degree of nurses’ grief as a reaction to patient death may vary in intensity. This variation may be influenced by several factors present within the nurse him/herself and the nurse–patient relationship. Due to the demands of their profession, nurses may have to suppress their grief to respond to duty’s call. This prevents them from undergoing the normal grieving process, which results to a range of consequences from burnout to potentially harmful addictions. Nurse educators have identified that historically nurses have not been prepared to care for dying patients. This lack of education has been reflected in the level and quality of terminally ill care provided to patients’.

The aim of the present paper is the economic evaluation of haemodialysis in a dialysis unit of a private clinic. Specifically, a comparative cost analysis between bicarbonate dialysis and haemodiafiltration is performed. One hundred and twenty (120) patients with end - stage kidney disease, undergoing haemodialysis participated in the study. Demographic, clinical and financial characteristics were taken from the patients’ medical records. Data were collected from the financial management of the clinic regarding staff salaries, capital and technological equipment, depreciation, expenditure on fixed assets and other consumables. Values of 2007 were used and haemodialysis session was considered as the unit of cost. The total cost of haemodiafiltration predominates by about 30% of bicarbonate dialysis. This significant increase in cost is due to the additional health equipment required in this method (bags and lines of haemodiafiltration). Haemodialysis is a highly expensive method of treating patients with chronic kidney disease, as based mainly on the use of innovative technologies. Similar analyses of economic evaluation are not considered fully documented, when not taking into account the clinical superiority and not attributing it in terms of cost - effectiveness.

The number of patients on dialysis has increased by about 50% in the past decade in Belgium. This growth is expected to continue, albeit at a slower pace, due to the ageing of the population and the increased prevalence of hypertension and diabetes, two of the main causes of end-stage kidney disease. The aim of this study was to assess the economic burden (i.e., dialysis procedure; hospitalizations; ambulatory care; medications; transport) to the public healthcare payer of patients undergoing dialysis in Belgium. Records of 130 Belgian patients on dialysis in 2006 were retrospectively reviewed to identify direct medical and non-medical resources used over a year. Official tariffs were used to cost the resources. Considering the prevalence of each dialysis modality in Belgium, the average cost of a dialysis patient was found to be €70,649 per year (haemodialysis: €72,350; peritoneal dialysis: €55,343). The dialysis procedure itself was the main cost driver (66% of all costs) followed by hospitalizations and ambulatory care (16% of all costs each). The dialysis procedure per se was 27% more expensive, while hospital and ambulatory services were respectively 28% and 45% more expensive for haemodialysis than peritoneal dialysis patients. Considering that there were 6,607 patients on dialysis in Belgium (0.06% of the Belgian population) at the end of 2006, it is estimated that the economic burden to the Belgian healthcare system was 467 million Euro or 2.45% of the healthcare budget. This study provides further evidence that home modalities, such as peritoneal dialysis, could help reduce the economic burden of dialysis on the healthcare budget.