Quality of life (QOL) is a term that reflects the expectations of an individual or society for a good life. These expectations may differ based on the individual's values, goals and sociocultural context in which she or he lives. It is crucial for clinicians to understand their patients’ values. High-quality clinician-patient decision-making is one of the cornerstones in chronic disease management, and when done well, patient-centered decision-making improves satisfaction, adherence, and ultimately QOL.1 QOL involves several domains that subjectively covers the emotional, physical, material, and social well-being of an individual. It is now recognized that QOL correlates with survival of patients.
End-stage kidney disease (ESKD) is an irreversible chronic disease and is associated with significantly poor QOL, ranking among the worst of any chronic medical condition.2 Poor QOL in patients with ESKD is associated with increased risk of mortality and hospitalization.3 Multiple factors contribute to the low QOL of dialysis patients including medical, social, psychological, and financial factors.
Several management options are available for patients with ESKD, including dialysis, transplantation, or conservative management. Each of the dialysis modalities (peritoneal dialysis, in-center hemodialysis, home hemodialysis) and transplant offer particular benefits and challenges that lead to different levels of QOL. The change in QOL of patients on dialysis extends to their care partners with significant burden on their lives. The QOL of care partners differs depending on the renal replacement therapy (RRT) modality. Higher care partner burden score was observed in the care partners of in-center hemodialysis (HD) patients than those of peritoneal dialysis (PD) or kidney transplant patients.4,5
In this chapter, we will focus on the QOL of patients with ESKD on home hemodialysis (HHD), compare it with QOL of patients with ESKD managed by other RRT modalities and shed some light on the QOL of care partners of patients on HHD.
TOOLS TO ASSESS QUALITY OF LIFE
QOL outcomes can be measured using a variety of tools that are either disease specific or more general health or utility, such as the 36-item Short Form questionnaire (SF-36).
The standard approach to reporting QOL is through patient-reported experience (satisfaction scores) and outcome measures (health and functional status and well-being). The health-related quality of life (Hr-QOL) questionnaire includes several variables: survival and life expectancy; various symptom states; numerous physiologic states such as blood pressure or glucose level; physical function states such as mobility and ambulation, sensory functioning, sexual functioning; emotional and cognitive function status such as anxiety and depression or positive well-being; perceptions about present and future health; and satisfaction with healthcare.6
The disease-specific tool most commonly used in kidney disease is the Kidney Disease Quality of Life 36-Item Short Form Survey (KDQOL-36).7,8 The KDQOL-36 augments the Short Form-12 generic core with ...