Innovations to Increase Home Hemodialysis Utilization: The Transitional Care Unit

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The Gap in the Current Care System

With good predialysis education, 30-50% of patients choose home dialysis.  However, a large proportion of patients have suboptimal or crash starts to dialysis.  Even among patients with chronic kidney disease in nephrologist care, uncertainty about disease progression makes it hard to well-time the modality education. Furthermore, before dialysis, patients can be averse to full engagement with dialysis education. It is not surprising then that a high proportion of patients feel they were not involved in modality choice or are not satisfied with their pretreatment education. The early period after starting in-center dialysis is thus the next opportunity to re-engage the patient and renegotiate the proper modality choice. This, however, is hard to achieve in the current care delivery system. On one side, people commencing dialysis are anxious and fearful.  They are coming to a new chapter in their lives and are occupied by how this treatment will save their lives. They are overwhelmed by the number of team members taking care of them and by the advice they are getting. They are making many adjustments that they are worried will affect their lives and livelihood, as well as the lives of their loved ones. At the same time, they are seeing these large and complicated dialysis machines, with staff humming around responding to frequent alarms and complications. On the other hand, in-center staff who provide the care and education are very burdened with large patient-to-staff ratios. With all of that, patients may accept that what they are exposed to is new reality and the right and only solution. “Learned helplessness” ensues, and patients become averse to self-care. It is no wonder then that the rate of transfer to home dialysis tapers down significantly after the first few weeks on in-center HD; for instance, one study showed that the probability of switching to peritoneal dialysis drops from 7.0% at month 1 to 0.9% at month 4 of dialysis. Patients commencing dialysis are vulnerable and need more attention and support. To disrupt the status-quo, a system dedicated to care of patients commencing in-center HD is required. Dedicated care programs at the time of this transition include a variety of bundled interventions, particularly patient education and case management, leading to optimized decision-making and improved outcomes. Multiple previous articles elaborated more on the purpose, structure, and function of these programs.

TCUs—an Overview

A TCU is a program that cares for patients commencing in-center HD. A TCU typically provides dedicated staff with more time for the patient in a structured program that is delivered typically over 3 to 8 weeks. The time made available to the patient allows the health care team to really learn about the individual patient and tailor their education and support. The program is structured to first address the patient’s fears and anxieties, to get to know the patient well, and get the patient to know the care team. The initial period also focuses on stabilizing the patient physically. These two elements are important because a patient who is unwell emotionally or physically cannot engage well in learning and decision-making. Subsequently, the health care team engages the patient with education on different aspects of living on dialysis, such as education about fluid, diet, and medicines. Modality education is at the core of the curriculum, including education about immediate options (in-center or home HD and peritoneal dialysis) and about kidney transplant, or even, as appropriate, about not wanting to do dialysis. The goal of modality education is not to make patients do home dialysis, but rather to enable the patient and family to make an informed choice through proper alignment of patient’s goals and social conditions to the suitable modality. Inadvertently pushing patients to choose home dialysis when it is not the appropriate choice puts patients at high risk of failure and burdening the patient and family. The TCU then supports patients to pursue their modality choices.

How TCUs Can Promote Transition to HHD

Engaging the Patient and Family

The TCU model is well-suited to deliver the shift in care delivery from a paternalistic prescribed care, which is inherent in in-center HD, to patient-driven care, which is more likely to involve self-care at home or in the center. Patient activation, which is brought about not only by improved knowledge but also by building skills and confidence, allows the patient to take the driving seat. It is hard to deliver this type of care in a rushed setting. However, in TCUs, where there is more one-to-one care and more time allowed for the health care team, empowering the patient can become a reality. There is time for listening to the patient, acknowledging their wishes and way of thinking, transforming the education to answer the patient’s immediate concerns, and work at the patient’s pace. The team also engages the family and includes them in the discussions and teaching, which is key to successful follow through of plans. If family members are against these plans, with or without proper understanding, they will be bound to fail. In addition, family members can shed light on realities the patient is not accounting for. Voicing concerns and objections early in the process enables dealing with them at an early stage to avoid surprises and frustrations down the road.

Education Material

Learning is about transfer of the experience and changing behavior. For that to happen, TCU staff need to account for the different learning styles: visual, aural, reading-writing, and kinesthetic. Different formats for educational materials, including the text, diagrams, audio, and videos, should be readily available. The variability also gives the coaches a repository of different flavors they can reach to, to vary their approach as necessary. The TCU team should involve patients in their dialysis care by working with them to perform tasks they are willing to do. Learning by doing not only emphasizes the education but also gives patients confidence that they can acquire and perform skills necessary for self-care, resulting in increased activation, reduced anxiety, and increased number of patients performing self-care or moving to dialyze at home.

Peer Mentoring and Peer Support

Most of the time, neither the nephrologist nor the professionals involved in the delivery of dialysis therapy can truly relate to the experience of patients undergoing the life-changing events of staring dialysis therapies. Medical advice by professionals comes from a place of authority and knowledge. An essential complimentary component thus is peer support, in which patients hear and discuss the personal experiences of fellow patients who passed through the same experience. Besides the knowledge, peer-mentoring and peer support provide patients with acknowledgments, validation, trust, and confidence and can help patients make decisions by reflecting on real experiences.  TCUs should facilitate the several forms of peer support including support group meetings, individual face-to-face or telephonic meetings, and web-based support groups. A program that helps develop peer mentors through a dedicated peer mentoring education and support program can maximize their input in a TCU.

Integration with the Home Program

Strong collaboration and coordination with the home dialysis program is crucial to the success of transitioning patients to the modality of choice. Early involvement of the home program helps at three levels: (1) supporting an informed modality choice: by connecting with the patient and family for education and to answer questions, (2) early evaluation for the patient’s home and social conditions to prepare the patient and environment for successful delivery of dialysis at home, and (3) supporting access preparation and lining up the patient for training. TCU teams have to be versatile on home dialysis. It is not enough if they only receive education on home dialysis but they should also be familiarized with the TCU training materials. Having TCU staff who are only experienced in delivery of in-center HD risks propagation of misinformation about home therapies. In-center HD staff exposure to home dialysis is mainly through managing patients with poor experiences, such as experiences of those who transfer to in-center HD after complications. In-center HD staff also know dialysis as the complicated therapy, which is associated with frequent complications and is better delivered by experts. This leads to in-center staff having knowledge gaps regarding home therapies and as such may convey misperceptions regarding these modalities. This problem extends beyond in-center HD staff and includes physicians. Physicians in fellowship training express low confidence in management of home HD, and part of the problem limiting the exposure to home therapies, particularly home HD, is the low prevalence of the modality itself. TCU programs need to tightly collaborate with home programs to build their staff to become home dialysis experts. They need to know the success stories, the satisfaction of patients on home dialysis, the challenges and solutions, and the rate, causes, and outcomes of potential complications. They need to be aware of common myths about home dialysis and know how to address them. This in-depth level of knowledge and experience will increase their passion about home dialysis, resulting in a fair representation of home options to patients.

Vascular Access Creation and Use

In addition to that education about dialysis access, including avoidance of central venous catheters (CVCs), is part of the curriculum, dialysis access readiness can become a bottleneck toward successful transition to home dialysis training. In relation to home HD specifically, few key aspects related to dialysis access merit further discussion: (1) surgical formation of permanent access, i.e., arteriovenous fistula or graft (AVF or AVG), (2) the initial use of the permanent vascular access, (3) dealing with patient concerns such as needle phobia and fears of needle dislodgement, and (4) considerations for CVC use for home HD. The TCU team needs to establish good relations with the surgical team placing permanent access through the center medical director and the referring nephrologist. Rapid referral, assessment, and surgical placement of permanent access should take place once a decision is clear whether the patient will be going for peritoneal dialysis or HD. Early surgery enables access to the in-center HD staff with good experience in accessing new AVF. Otherwise, coordination between the in-center and home dialysis teams is needed for challenging new AVF. Other options include the use of ultrasound or marking the tract of the AVF. Needle phobia or needle fear is a major barrier for patients toward home HD. Peer support and observing other training patients place needles may help new patients. Other options available for the TCU team include strategies to reduce pain, such as warm compressions and topical analgesia, among other interventions. Education should highlight that the risk of needle dislodgement is low and should include information about prevention techniques. Finally, consideration need to be made in patients with CVCs who choose to do home HD, whether to wait until a permanent access is ready or transition immediately with CVC. While complication rates are lower in in-home HD patients with AVF or AVG than in those with CVC, delaying transfer to home dialysis interferes with the chosen patient’s lifestyle risks continued exposure to in-center HD complications and risks having the patient lose interest in transitioning to home HD. For these patients and those for whom a permanent vascular access might not possible, CVC use should not delay or prevent transitioning to home HD.

Familiarity with Home Dialysis Machines

A person’s life goals should guide modality choice. However, their perceptions and misperceptions about the technology and how machines play a large role in modality choice requires consideration. On in-center HD, patient’s first experience with dialysis machines is that they are large, complicated, and noisy. Patients’ perceptions that the machine and supplies are going to medicalize their homes or make them look like hospitals is a barrier for transition to home dialysis. Several new products are now available for patients. TCU teams need to make patients aware of the many options available for them. Patients will be able to have a machine with a small footprint, which has a friendly interface and is easy to operate. In addition, concerns about added cost (electricity, water, and plumbing) need to be addressed. New machines may use wireless technology to communicate with the health care team. Any concerns about Wi-Fi or cellular connectivity issues and related costs should be addressed. Mobile health technologies can be introduced early given that over two-third of all dialysis patients are mobile health proficient. Early discussion regarding each patient’s technological proficiency can aid in incorporating telehealth to support home dialysis transition. TCUs should expose the patients to home dialysis machines, not only by seeing them but also by working with the patient to picture them in their living rooms or bedrooms. Some TCU models use home HD machines during the transitional care period. Increased patient familiarity of home dialysis machines in this new environment helps overcome technology fear and anxiety.

Preventing the In-Center HD Status from Becoming the Norm

A key concern about the transitional period is having patients get accustomed to in-center dialysis. Change associated with starting dialysis is hard. It is even harder to make a transition more than once. If a patient adjusts to in-center HD, transitioning to another modality will involve a new facility, new staff, new learnings, and multiple other new life adjustments. For all modality options to have equal chance of being chosen, TCUs need to avoid making in-center HD seem like the default option for the patient. As much as possible, efforts need to be made to separate the TCU from in-center facilities in location, physical space, machines, and staff.

How Promising Is a TCU Model in Relation to Growing of Home Dialysis?

Dedicated staff with endorsement of an enthusiastic physician hold the key to successful programs. It is still not clear how successful these programs will be at a larger scale. In addition, it is not clear if patients embracing home HD as an initial therapy are going to persist with it, as they need to take on more work but have not experienced the burdens and adverse events of in-center HD. In fact, the data show that home HD patients in the United States and other countries currently are mostly prevalent patients while peritoneal dialysis is the home modality choice of incident patients. The role of TCUs affecting this distribution will need to be seen and would benefit from partnering with large patient-focused organizations such as the Patient-Centered research Outcomes Institute. The fact that home HD was the only solution for uremia in the past indicates that it certainly is a valid option. While nephrologists and other professionals see the advantages of home HD, both from experience and from the published data, the questions is whether patients value being in charge of their own care while taking on more responsibility early in their journey with dialysis care.

Conclusion

In summary, the underutilization of HHD in the United States can be increased through the incorporation of TCU programs in future models of care. Presently, there are limited data to support one definitive TCU model or to indicate how much growth we would anticipate as a result of TCU program implementation. It appears reasonable to hypothesize that focusing on more intense clinical stabilization with patients being equipped with self-management and coping mechanisms would benefit patients to choose home HD more often. The sharing of experience by the United States and international dialysis providers can contribute to improvement of TCUs and potentially increased home HD utilization.