Dialysis modality planning and decision-making is integral to the treatment process for many 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 increased independence for patients, and lessen the burden and time spent traveling to and from dialysis facilities. However, despite these important benefits, home dialysis is much less common 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; 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.
Even though the barriers to home dialysis are known, there have been few interventions and solutions to address them. And, 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.
The goal is to remove the barriers to home dialysis so that it becomes a viable choice for anyone on dialysis .NKF's multi-year project for home dialysis will foster collaboration among a multi-stakeholder group of patients, clinicians, care partners, researchers, health payers and healthcare industry representatives to facilitate the development of research designs to measure home dialysis quality and create interventions to overcome the barriers of maintaining dialysis treatment at home.
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.
At the first Controversies Conference stakeholder attendees:
- Explored the known barriers to beginning and continuing home dialysis
- Identified gaps in the research
- Proposed potential solutions in the form of testable interventions, and solidified collaborations for further developing suggested research designs.
February 2018 – November 2018
Develop working group(s) that will collaborate together over the course of a year to expand the suggested research ideas into testable approaches to improve access to and continuity of home dialysis—with an emphasis on patient involvement throughout the research process.
Working groups to present testable approaches and designs at second Home Dialysis Controversies' Conference.
This conference was [partially] funded through a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award Initiative (EAIN-6117).