Longitudinal Study of Quality of Everyday Life Experience among Home Dialysis Patients and Their Family Caregivers - ABSTRACT The prevalence of end-stage renal disease (ESRD) in the U.S. has grown exponentially in recent years, now reaching over 800,000 people, most of whom have multiple chronic illnesses, and most of whom require dialysis to sustain life. In-center hemodialysis (HD), which requires travel to a dialysis facility 3 times a week for a ~4-hour treatment session, has been the most common form of dialysis for many years. However, over the past 10 years there has been a national push to increase the uptake of home dialysis, i.e., peritoneal dialysis (PD) and home hemodialysis (HHD). During this time, home dialysis has nearly doubled from 7.5% to 13.4% of patients on dialysis. Recently, the Centers for Medicare & Medicaid Services (CMS), the largest primary payer for ESRD treatment, launched payment policies to incentivize the uptake of home dialysis and kidney transplantation with a goal of reaching 80% of the incident ESRD population. But the latest national data show that a majority of patients who tried home dialysis in 2018-2019 switched to in-center HD or died by the end of their second year, suggesting there are very significant challenges in coping with home dialysis. While there is a clear need for interventions and policies to support those who manage dialysis at home, we lack in-depth knowledge of the patient and family caregiver experiences when their home is medicalized by dialysis at home. The everyday experiences, including the workload associated with home dialysis superimposed on existing multimorbidity is largely unknown, as are the facilitators and barriers to long-term success in home dialysis. To address this critical gap, we propose a prospective longitudinal cohort study with 221 home dialysis patients and their caregivers to characterize the quality of their everyday life experiences to understand how they incorporate dialysis into their daily routines, with a focus on how these experiences and life satisfaction change over time. For Aims 1 and 2, we will use the Day Reconstruction Method with repeated measures at baseline and every 2 months. We will characterize the quality of everyday life experience and life satisfaction among home dialysis patients and their caregivers over 12 months (Aim 1). We will examine how the quality of everyday life experience and life satisfaction affect patient and caregiver outcomes, including self-rated overall health (patients and caregivers), complications (e.g., access infection, peritonitis, sepsis), patients’ healthcare resource use (ED visits and hospital admissions), burnout (patient and caregiver), and whether the patient continues on home dialysis or not (Aim 2). For Aim 3, we will use qualitative interviews to explore the perspectives of patients and caregivers who convert to in-center HD about the circumstances that led to the decision to discontinue home dialysis. Findings from our research will contribute to the development of data- based interventions and policies to enhance day-to-day living quality and well-being for those on home dialysis. Such knowledge can increase the uptake of home dialysis as a high-quality, high-value care option that is well- aligned with the care and life priorities and capacities of patients and caregivers.
