The Importance of the Patient Perspective and Real-World Experience in Home Dialysis Training

Access to care is crucial for kidney patients, as it ensures timely, equitable, and life-sustaining treatment, which helps remove barriers many face. Without this access, individuals risk significant health complications, as early detection and management of kidney disease are vital in addressing risk factors and improving outcomes. These measures underscore the essential role that accessible care plays in the lives of those with kidney disease. The availability of multiple dialysis options further strengthens patient care by offering individuals the freedom to select a treatment best for their needs. By providing the choice of in-center treatment (hemodialysis) or having their dialysis in their home (home hemodialysis or peritoneal dialysis), patients can consider personal preference and lifestyle when selecting their treatment plan. This flexibility not only fosters comfort and ownership but it also supports better clinical outcomes and quality of life. This ability to be empowered to make the decision on modality ensures that care remains patient-centered. When dialysis becomes inevitable, patients rely on their Nephrologist to explain what this means for them as well as the options available. But what if your doctor is not comfortable with nor has the necessary understanding of home dialysis? To attempt to solve this problem, the American Society of Nephrology (ASN) started a new education program for fellows in 2023, called the Home Dialysis Virtual Longitudinal Education Program (ASN-HDU), in partnership with Home Dialysis University (HDU). Although this education is a step in the right direction, from a patient's perspective, the program is not enough. With average scores of 7–8 of 10 for peritoneal dialysis and 4–5 of 10 for home hemodialysis regarding their comfort levels,1 there is a huge gap between where these fellows are and where patients need them to be. The main component missing in this educational training is real-world experience. Without the combined classroom and hands-on experience, doctors may never fully comprehend what the patient has to contend with and overcome. Without being fully informed of not only what the options are, but what they entail, how can a patient make the best decision for themselves? Do physicians fully recognize the potential limitations in a patient's home, such as insufficient space to accommodate the requirements of home dialysis? Are they aware that each month, patients must receive and must store large shipments of dialysis fluid? Is there a thorough discussion about the critical need for a reliable support system, ensuring a companion is present, especially in the initial stages, to promote safety and compliance? If a companion is not available, are they aware of how they are able to access a home health nurse? What happens when a patient lacks the resources or ability due to poor health to maintain a clean and sanitary environment at home? These are just a few of the essential questions that must be thoughtfully addressed and integrated into the decision-making process for home dialysis. To address these deficiencies in the HDU, I recommend that the program integrates immersive, hands-on training through direct patient interactions and home visits, enabling fellows to witness the realities patients face beyond the clinic. Creating mentorship opportunities with experienced home dialysis practitioners and patients themselves would cultivate deeper understanding. Furthermore, practical modules detailing the logistical, environmental, and psychosocial challenges of home dialysis—such as managing supply deliveries, ensuring sanitary conditions, and establishing robust support systems—should be included. These modules should be sure to have patient voices, amplifying both the physical and emotional burdens faced while on dialysis. It is imperative that training programs prioritize equipping patients with the skills and knowledge needed to actively manage their health—a concept known as Patient Activation. Many individuals undergoing dialysis lack a comprehensive understanding of kidney disease, which can hurt their ability to make informed choices about their care. Promoting patient education and empowering individuals to confidently engage in their own health decisions lays the groundwork for improved outcomes, greater autonomy, and a higher quality of life for those living with kidney disease. By broadening the curriculum to encompass real-world complexities and facilitating open dialogue between clinicians and patients, the HDU can empower future nephrologists to guide patients with confidence, compassion, and true expertise. The ASN-HDU program is an important initiative that equips fellows with greater knowledge and confidence in supporting home dialysis. However, gaps remain. The goal of better-trained physicians who can offer patients safer, more flexible treatment options is necessary. This can only happen if these physicians are fully aware of all aspects of each treatment option and not only present the patient with the positive aspects of home dialysis but also the obstacles and potential downside that may present themselves. Truly informed, collaborative decision making is the path to improved accessibility, affording kidney patients more independence, better care, and enhanced health outcomes.