Churchill Lucas James, Reintjes Frances, Pauly Robert, Shah Nikhil, Thompson Stephanie
Division of General Internal Medicine, Department of Medicine, University of Alberta, Edmonton, Canada.
Alberta Kidney Care-North, Alberta Health Services, Edmonton, Alberta, Canada.
Can J Kidney Health Dis. 2025 Jan 10;12:20543581241312625. doi: 10.1177/20543581241312625. eCollection 2025.
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.
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).
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.
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.
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.
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.
加拿大接受肾脏替代治疗的肾衰竭患者人数日益增加，这使得透析项目需要扩大。尽管基于机构的血液透析是加拿大主要的透析方式，但它比家庭透析（腹膜透析或家庭血液透析）成本高得多。增加家庭透析使用率的举措通常包括讲授式和体验式教育。我们描述了一项新颖的本地举措——“甜蜜家园”（HSH），即有家庭透析亲身经历的个人和肾脏健康专业人员在一个模拟家庭环境的诊所中，与参与者分享他们的经验和知识。本报告的目的是描述我们的HSH项目，并评估其可接受性以及对未来扩大规模和推广的适用性。我们还探讨了项目参与者中家庭透析的使用率。
我们通过匿名调查收集了每次HSH活动参与者的反馈。我们从两个关联数据库，即加拿大器官替代登记处（CORR）和一个区域临床数据库——肾脏病信息系统（NIS），获取了随访时的临床和人口统计学数据以及透析方式。
根据透析方式（即非依赖透析参与者的比例与接受基于机构的维持性血液透析参与者的比例）以及居住在偏远地区（定义为距离活动地点超过200公里）的比例来评估覆盖面。我们将对家庭治疗（腹膜透析、家庭血液透析或两者皆有）感兴趣的参与者比例作为可接受性的衡量标准。人口统计学数据和调查数据用计数和百分比进行汇总。对调查中的自由文本进行整理和总结。从参与者参加项目开始随访至2022年6月21日或死亡。
2015年至2019年期间，共有291名参与者参加了HSH。在参加项目时，70%的参与者患有无需透析的慢性肾脏病（CKD G4 - 5ND），30%的参与者在接受基于机构的维持性血液透析，处于CKD G5D阶段。参与者主要居住在城市（即埃德蒙顿）。活动结束后，92%的参与者表示他们对家庭透析方式感兴趣。从调查自由文本中可知，参与者普遍表示他们重视HSH活动促进者提供的“第一手信息”和“现实生活视角”，并且模拟体验有助于缓解对家庭透析的焦虑。参与者希望举办更长时间的HSH活动，并有更多提问机会。在中位随访858天（四分位间距 = 353 - 1347）时，该队列中18%的人仍无需透析，25%的人死亡。在其余167名参与者中，41人（25%）接受家庭透析方式（腹膜透析或家庭血液透析），40人（24%）接受了肾脏移植，86人（51%）接受基于机构的血液透析。
通过访谈和焦点小组可以更深入地了解HSH项目如何影响家庭透析的决策。关于家庭治疗的采用与参加HSH之间无法得出因果推论。我们没有关于在随访中最后记录的透析方式之前谁接受过家庭治疗的数据，这可能低估了家庭治疗的使用情况。
HSH项目具有很高的可接受性，92%的参与者表示他们对家庭透析方式感兴趣。通过从接受基于机构的血液透析的人群以及农村和偏远地区招募更多人员，可以提高HSH的覆盖面。
