Dialysis modality planning and decision making is integral to the treatment process for many chronic kidney disease (CKD) patients, and home dialysis in particular has the potential to address some of the quality of life issues experienced by dialysis patients. Research suggests that dialysis sessions at home have clinical outcome benefits, provide better quality of life and more independence for patients, and decrease burden and time spent traveling to and from facilities. Home dialysis is much less common, however, in the United States than in other countries. The barriers to accessing home dialysis, and remaining on it, are largely known: the time and costs of home dialysis training for the patient, family member, and caregiver; the lack of care-partner support; the lack of patient and clinician familiarity with the home dialysis prescription and follow-up care; and late diagnosis, which requires a rapid start of hemodialysis in–center with a catheter. There have been few interventions and solutions to address how to overcome these barriers. Additionally, this smaller patient population (compared with in-center dialysis patients), along with modality failure resulting in a transfer to in-center hemodialysis, makes it more difficult to obtain strong, clear outcomes data for home dialysis modalities.
Historically, the National Kidney Foundation has hosted Controversy Conferences to bring renal care community stakeholders together in to focus on a timely or controversial topic lacking evidence to address in a clinical practice guideline. Over the course of 24 months, this project will foster collaboration among a multi-stakeholder group of patients, clinicians, caregivers, researchers, health payers, and healthcare industry representatives to facilitate the development of research designs that aim to measure home dialysis quality as well as interventions to address the barriers to maintaining dialysis treatment at home.
This collaboration will begin with a December 2017 conference to address who benefits from home dialysis and why; what can be done to help dialysis patients realize and achieve their modality preferences; and where evidence is lacking on the benefits, harms, and needs of patients regarding home dialysis modality choices. Attendees will explore known barriers to beginning and continuing home dialysis, identify gaps in research, propose potential solutions in the form of testable interventions, and solidify collaborations for further developing suggested research designs. Attendees will form stakeholder groups that will work together over the course of a year to expand the suggested research ideas into design testable approaches to improve access to and continuity of home dialysis—with an emphasis on patient involvement throughout the research process. They will present these topics and designs at a second Home Dialysis Controversies Conference in 2018. The proposed conference series and stakeholder working group’s long-term objective is to create a roadmap to establish a cross organizational home dialysis quality improvement initiative, which will connect patients with relevant research projects and with resources for participating in patient-driven home dialysis research.
More to Explore...
Project Resource: Conference Agenda
Project Resource: Pre Conference Survey
Project Resource: Literature Review
Project Resource: Full Conference Video
Project Resource: Home Dialysis Quality Initiative Road Map
Project Resource: Breakout Group Vignettes