The Potential Burden of Home Dialysis on Patients and Caregivers: A Narrative Review

Abstract

Purpose of review: Home dialysis modalities offer several benefits for patients with end-stage kidney disease when compared with facility-based thrice-weekly hemodialysis. To increase uptake of home dialysis, many centers are encouraging a “home-first” approach. However, it is important to appreciate that “one size may not fit all” and that dialysis modality selection is a complex decision that needs to be individualized. The purpose of this review was to explore aspects associated with home dialysis that may be associated with burden for patients and their caregivers and to discuss strategies to alleviate these concerns. Sources of information: Original research articles were identified from PubMed using search terms “peritoneal dialysis,” “home hemodialysis,” “home dialysis,” “barriers,” “quality of life” and “burden.” Methods: We performed a focused narrative review examining potential sources of burden with home dialysis therapies after conducting a critical appraisal of the literature and identifying the major recurring themes. Key findings: Home dialysis is associated with burden for certain patients. Indeed, some patients may experience ongoing concerns regarding the risks of adverse events and of inadequately performing dialysis on their own. Psychosocial issues affecting quality of life may also arise and include fear of social isolation, sleep disturbances, perceived financial burden, anxiety, and fatigue. Patients who depend on a caregiver may worry about creating a stressful home environment for their close ones. Furthermore, the demands associated with being a caregiver may lead to psychosocial distress in the caregivers themselves. All these factors may lead to burnout and consequently, therapy discontinuation necessitating an unplanned transition to in-center hemodialysis leading to adverse outcomes. However, certain strategies may help alleviate burden especially if concerns are identified early on. Limitations: As we did not apply any formal tool to assess the quality of the studies included, selection bias may have occurred. Nonetheless, we have attempted to provide a comprehensive review on the topic using numerous diverse studies and extensive review of the literature. Implications: Future studies should focus on better identifying patient priorities and strategies to facilitate dialysis modality selection and improve quality of life.