Home Sweet Home: A Program Report on Promoting the Uptake of Home Dialysis.

Abstract

Purpose of program: Canada's growing prevalence of people with kidney failure receiving kidney replacement therapy has necessitated the expansion of dialysis programs. Although facility-based hemodialysis is the predominant dialysis modality in Canada, it is substantially costlier than home dialysis (peritoneal or home hemodialysis). Initiatives to increase the uptake of home dialysis typically consist of didactic and experiential education. We describe a novel local initiative, Home Sweet Home (HSH), where individuals with lived experience of home dialysis and kidney health professionals share their experience and knowledge with participants in a clinic setting that has been set up to represent a metaphorical home. The aim of this report is to describe our HSH program and to evaluate its acceptability and reach for future scale and spread. We also explored home dialysis uptake among program participants.

Sources of information: We collected feedback from attendees following each HSH event with anonymized surveys. We obtained clinical and demographic data and modality at follow-up from 2 linked databases, the Canadian Organ Replacement Register (CORR) and a regional clinical database, the Nephrology Information System (NIS).

Methods: Reach was evaluated according to modality (i.e., the proportion of participants who were non-dialysis dependent vs the proportion receiving facility-based maintenance hemodialysis) and the proportion living remotely (defined as greater than 200 km from the event). We examined acceptability as the proportion who were interested in a home therapy (either peritoneal dialysis, home hemodialysis, or both) after attending the event. Demographic data and survey data were summarized with counts and percentages. Free text from surveys was collated and summarized. Participants were followed from the time of program attendance until June 21, 2022 or death.

Key findings: A total of 291 participants attended HSH between 2015 and 2019. At the time of program attendance, 70% of participants had chronic kidney disease (CKD) not requiring dialysis (CKD G4-5ND) and 30% had CKD G5D on facility-based maintenance hemodialysis. Participants were primarily urban dwelling (ie, in Edmonton). After the event, 92% of participants indicated they were interested in a home dialysis modality. From the survey free text, participants commonly expressed that they valued the "first-hand information" and a "real life perspective" from HSH facilitators and the simulation helped to ease anxiety about home dialysis. Participants expressed a desire for longer HSH events with more opportunities to ask questions. At a median follow-up of 858 days (interquartile range = 353-1347), 18% of the cohort remained dialysis independent and 25% died. Of the remaining 167 participants, N = 41 (25%) were receiving a home dialysis modality (either peritoneal dialysis or home hemodialysis), N = 40 (24%) received a kidney transplant, and N = 86 (51%) were dialyzing with facility-based hemodialysis.

Limitations: A more in-depth understanding of how the HSH program influenced decision-making for home dialysis could be attained from interviews and focus groups. No causal inferences can be made regarding the uptake of home therapies and HSH attendance. We did not have data on who received a home therapy prior to the last recorded modality at follow-up, which likely underestimated the use of home therapies.

Implications: The HSH program was highly acceptable with 92% of participants reporting they were interested in a home modality. The reach of HSH could be improved by recruiting more individuals from facility-based hemodialysis and rural and remote locations.