How many dialysis patients are there




















About 1 in 2 people with very low kidney function not on dialysis don't know they have kidney disease. Approximately 1 in 3 adults with diabetes and 1 in 5 adults with high blood pressure may have kidney disease. COVID is targeting people with kidney disease , kidney transplant patients, and those at risk for kidney disease. What is Kidney Disease? Other conditions that can lead to KFRT are: glomerulonephritis diseases that damage the kidney's filtering units , which are the third most common type of kidney disease; inherited diseases, such as polycystic kidney disease; malformations at birth that occur as a fetus develops; lupus and other immune diseases; obstructions such as kidney stones or an enlarged prostate; and repeated urinary tract infections, which can also lead to kidney infections and can cause long-term damage to the kidneys.

People with kidney disease are at greater risk for cardiovascular disease and death at all stages of kidney disease. Kidney disease and heart disease are linked and have common risk factors, such as diabetes and hypertension. Each condition can lead to or worsen the other. Dialysis comes in two forms: hemodialysis HD or peritoneal dialysis PD. Both forms remove wastes and extra fluid from your blood.

Patients receive hemodialysis usually 3—4 times a week, either at home or at a dialysis center. During hemodialysis, your blood is pumped through a dialysis machine, where it is cleaned and returned to your body. With peritoneal dialysis, your blood is cleaned inside your body every day through the lining of your abdomen using a special fluid that is periodically changed.

Peritoneal dialysis can be done at home, at work, at school, or even during travel. Home dialysis is an increasingly popular mode of treatment, and is associated with better outcomes. A kidney transplant places a healthy kidney into your body from a deceased donor or from a living donor, such as a close relative, spouse, friend, or generous stranger. A kidney transplant, however, is a treatment, not a cure.

Antirejection and other medications are needed to maintain the transplant. The active waiting list remains substantially larger than the supply of donor kidneys, which presents a continuing challenge.

Although it is very important for patients who are nearing the need for dialysis or kidney transplantation to be cared for by a nephrologist, in , In , , Americans had kidney failure, and needed dialysis or a kidney transplant to survive 2 in every 1, people. About , people started KFRT treatment in , of which approximately , started dialysis as the initial mode of therapy.

In , 22, people received a kidney transplant. By the end of , a total of , Americans were living with a kidney transplant. The high cost of dialysis means that consideration must be given to whether the benefits obtained by dialysis outweigh those obtained by addressing other health-care priorities, such as malaria or tuberculosis. Shared decision-making, involving the patient and their family, is recommended as an approach to allow an informed choice of the most appropriate course to follow.

Over the past six decades, the availability of long-term dialysis has prolonged the lives of millions of people worldwide, often by serving as a bridge to kidney transplantation. Yet, patients on dialysis continue to bear a high burden of disease, both from multimorbidity and owing to the fact that current dialysis modalities only partially replace the function of the native kidney, resulting in continued uraemia and its consequences.

Thus, although dialysis prevents death from kidney failure, life expectancy is often poor, hospitalizations particularly for cardiovascular events and infection are frequent, symptom burden is high and health-related quality of life is low 22 , 92 , Given the multitude of health challenges faced by patients on dialysis, it is necessary to develop a priority list of issues.

For much of the past three decades, most of this prioritization was performed by nephrology researchers with the most effort to date focusing on approaches to reducing all-cause mortality and the risk of fatal and non-fatal cardiovascular events.

These disappointments notwithstanding, it is important that the nephrology community perseveres in finding ways to improve patient outcomes. In the past 5 years, nephrology researchers have increasingly engaged with patients to understand their priorities for meaningful outcomes that should be used to measure progress.

The overarching message from this engagement is that although longevity is valued, many patients would prefer to reduce symptom burden and achieve maximal functional and social rehabilitation. This insight highlights the high symptom burden experienced by patients receiving long-term dialysis 92 , 93 , 96 , These symptoms arise as a consequence of the uraemic syndrome. Some of these symptoms, such as anorexia, nausea, vomiting, shortness of breath and confusion or encephalopathy, improve with dialysis initiation , , , but many other symptoms, such as depression, anxiety and insomnia do not.

Moreover, other symptoms, such as post-dialysis fatigue, appear after initiation of haemodialysis. Of note, many symptoms of uraemic syndrome might relate to the persistence of protein-bound uraemic toxins and small peptides so-called middle molecules that are not effectively removed by the current dialysis modalities.

The development of methods to improve the removal of those compounds is one promising approach to improving outcomes and quality of life for patients on dialysis, as discussed by other articles in this issue. Patients on dialysis report an average of 9—12 symptoms at any given time 92 , 93 , To determine which of these should be prioritized for intervention, the Kidney Health Initiative used a two-step patient-focused process involving focus groups and an online survey to identify six symptoms that should be prioritized by the research community for intervention.

These include three physical symptoms fatigue, insomnia and cramps and three mood symptoms depression, anxiety and frustration Fatigue was identified as one of the four core outcomes, whereas depression, pain and feeling washed out after haemodialysis were identified as middle-tier outcomes , , Despite the importance of these symptoms to patients on dialysis, only a few studies have assessed the efficacy of behavioural and pharmacological treatments on depression , , , , Even more sobering is the observation that very few, if any, published studies have rigorously tested interventions for fatigue or any of the other symptoms.

The nephrology community must now develop standardized and psychometrically robust measures that accurately capture symptoms and outcomes that are important to patients and ensure that these are captured in future clinical trials , Approaches to maximizing functional and social rehabilitation are also important to patients with kidney failure.

Given the importance of these outcomes to stakeholders, including patients, it is imperative that nephrology researchers develop tools to enable valid and consistent measurement of these outcomes and identify interventions that favourably modify these outcomes. As described above, the status quo of dialysis care is suboptimal. Residual symptom burden, morbidity and mortality, and economic cost are all unacceptable, which begs the question of what steps are needed to change the established patterns of care.

Patients are currently unable to live full and productive lives owing to the emotional and physical toll of dialysis, its intermittent treatment schedule, the dietary and fluid limitations, and their highly restricted mobility during treatment. LMICs face additional difficulties in the provision of dialysis owing to infrastructural requirements, the high cost of this treatment, the need for a constant power supply and the requirement for high volumes of purified water.

For LMICs, innovations that focus on home-based, low-cost therapies that promote rehabilitation would be especially beneficial. We contend that initiatives to transform dialysis outcomes for patients require both top-down efforts for example, those that involve systems changes at the policy, regulatory, macroeconomic and organizational levels and bottom-up efforts for example, patient-led and patient-centred advocacy and individual teams of innovators. Top-down efforts are required to support, facilitate and de-risk the work of innovators.

Conversely, patient-led advocacy is essential for influencing governmental and organizational policy change. Here, by considering how selected programmes are attempting to transform dialysis outcomes through innovation in support of high-value, high-quality care, we describe how top-down and bottom-up efforts can work synergistically to change the existing ecosystem of dialysis care Fig. The efforts described below are not an exhaustive list; rather, this discussion is intended to provide a representative overview of how the dialysis landscape is changing.

Initiatives to transform dialysis outcomes for patients require both top-down efforts for example, those that involve systems-level changes at the policy, regulatory, macroeconomic and organizational level and bottom-up efforts for example, patient-led and patient-centred advocacy efforts and efforts from individual teams of innovators.

Both of these efforts need to be guided by priorities identified by patients. Such an approach, focused on patient-centred innovation, has the potential to result in meaningful innovations that support high-quality, high-value care. NGOs, non-governmental organizations. In , the American Society of Nephrology ASN and the FDA established the KHI as an umbrella organization through which the kidney community can work collaboratively to remove barriers to the development of innovative drugs, devices, biologics and food products, in order to improve outcomes for people living with kidney diseases.

To advance its mission, KHI has initiated a number of projects composed of multidisciplinary workgroups. A major accomplishment for the KHI was the establishment of a precompetitive environment to promote innovation while ensuring patient safety.

The KHI is the largest consortium in the kidney community, with over member organizations including patient groups, health professional organizations, dialysis organizations, pharmaceutical and device companies, and government agencies. During the first 7 years of its existence, the KHI has launched and in many cases completed projects that have facilitated the development of new therapeutic options for dialysis patients Box 2 , as well as published position papers on topics relevant to innovation in haemodialysis care, including innovations in fluid management and symptom management in patients on haemodialysis, recommendations for clinical trial end points for vascular access , perspectives on pragmatic trials in the haemodialysis population and regulatory considerations for the use of haemodiafiltration Patient and Family Partnership Council.

The PFPC also advises industry and research partners of patient needs and preferences as new products are planned and developed. The PFPC continually emphasizes that innovation will only be successful if built around the needs of people with kidney disease and focused on improving their quality of life. The aim of this project is to create a harmonized common data standard for kidney failure. The availability of a uniform data standard could accelerate the pace of scientific discovery, facilitate the creation of scientific registries for epidemiological surveillance and allow the development of common metrics for value-based health care.

This project, which is supported by a 3-year contract with the FDA, is based on the premise that access to scientifically valid patient preference information could positively inform the decisions of industry and regulators as they design and review new devices for individuals with kidney failure.

This project is intended to facilitate coordinated efforts between regulators and the nephrology community to streamline the clinical development pathway. The primary objectives of the project are to define terminology for future KRT products for example, wearable, portable, implantable and artificial kidney and identify the most appropriate trial designs and end points for a variety of KRT products.

Components of the AAKH that are relevant to dialysis care include a directive for education and support programmes to promote awareness of kidney disease; a shift in the focus of reimbursement initiatives from in-centre haemodialysis to home therapies, transplantation and upstream CKD care; a system that rewards clinicians and dialysis facilities for providing a range of treatments for kidney failure, with the aim of increasing uptake of home dialysis and transplantation; and incentives for nephrology care teams to focus on reducing costs and improving outcomes by providing longitudinal care of patients with kidney disease.

Finally, and perhaps most radically, the AAKH calls on the US Department of Health and Human Services to support premarket approval of wearable and implantable artificial kidneys and welcomes other strategies to facilitate transformative innovation in dialysis devices.

The AAKH directive specifically identifies the KidneyX programme described below as the vehicle with which to drive this innovation. The AAKH is the most ambitious US policy initiative ever undertaken to transform the care of patients with advanced kidney disease.

Its agenda is still being shaped by the federal governmental agencies, with input from professional societies and other kidney community stakeholders, but this initiative provides a framework and support for transformative innovation in dialysis care. Key strengths of the Roadmap include its patient-centred focus and the description of multiple solution pathways for different technologies for example, portable, wearable and implantable devices that may be purely mechanical, cell-based or hybrid systems , each with appropriate timeline projections.

KidneyX is a public—private partnership between the Department of Health and Human Services and the ASN, and is aimed at accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care. The current major focus of KidneyX is to catalyse the fundamental redesign of dialysis, supported by a series of competitions. Phase I prizes focused on innovations in biomaterials, novel biosensors and safety monitors used for haemodialysis, as well as approaches for improved vascular access and the development of novel technologies that replicate kidney function more precisely than conventional dialysis.

Phase II focuses on strategies to build and test prototype solutions or components of solutions that can replicate normal kidney function or improve haemodialysis access. KidneyX has also awarded a series of Patient Innovator Challenge prizes to patients who have proposed innovative solutions to problems emanating from their everyday experiences with kidney disease, including approaches to monitoring blood electrolyte levels and increasing the accessibility of patient education resources.

It supports research into the causes, prevention and treatment of kidney failure. Furthermore, it works to improve the quality of dialysis treatment and increase the number of kidney transplants. All projects are planned and organized with considerable patient involvement. The DKF also offers financial support to kidney research projects by large Dutch multi-centric consortia.

These projects not only promote innovation in the Netherlands but also support trans-national European Union EU -supported projects with Dutch participation or leadership, such as Horizon and Horizon Europe.

Neokidney is a partnership between the DKF and several companies that specialize in miniaturization of dialysis equipment including dialysis pumps and sorbent technology for dialysate regeneration. This partnership is aimed at developing a small, portable haemodialysis device that will enable more frequent dialysis sessions, permit more flexibility for patients and improve patient quality of life, as well as reduce health-care costs.

The first prototype is currently undergoing preclinical testing and is expected to be tested in humans soon, with the aim of demonstrating proof-of-concept for the first portable haemodialysis machine for daily use, requiring only a limited volume of dialysate. In addition to the development of miniaturization technologies, the partnership is also investigating the use of polymer membranes that permit combined filtration and absorption to achieve more effective haemodialysis To reach this goal, NTDS uses a multi-pronged approach.

For example, education strategies via publications , , , , and webinars that address various aspects of infection prevention and standards of care, use of social media, development of an interactive chapter for trainees and clinicians, and invited lectures are aimed at ensuring that nephrologists, nurses, dialysis administrators and other professionals understand the risk of dialysis-related infections and evidence-based best working practices.

NTDS also interacts with experts in infection detection, prevention and treatment within federal, state and local health departments who can provide advice and assistance that is independent of the regulatory and potentially punitive arms of health departments.

NTDS promotes the appropriate use of these experts in settings where expert advice is needed. To promote leadership among physicians and nurses, NTDS is sponsoring a leadership academy to ensure that knowledge pertaining to evidence-based best working practices is applied to improve workflows in clinical practice. Effective leadership is a requirement, particularly in complex settings, to ensure that patient safety is prioritized and to motivate staff to use best practices.

NTDS are also collaborating with human factors engineers to study the workflows used in haemodialysis facilities and help to define ways of avoiding errors that lead to infection.

As a first step in this process, NTDS and human factors engineers have spent time in various haemodialysis facilities to obtain information about the complex processes of care within those facilities, particularly with regard to the use of haemodialysis catheters and approaches to hand hygiene, injection safety and disinfection. Better understanding of current processes may lead to better workflow design.

Finally, based on lessons learned during the Ebola Crisis of , an NTDS work group has designed processes to anticipate and respond to unexpected health-care crises. As discussed earlier, kidney failure remains a death sentence for many residents of LMICs owing to a lack of access to dialysis. The prize was awarded to an engineer for a system that runs off solar power and includes a miniature distiller for producing pure water from any source via steam distillation.

The purified water can then be mixed with electrolytes in empty PD bags to produce cheap, homemade dialysis solutions. The system will ideally fit into a small suitcase This device remains under development with the goal of initiating clinical trials and ultimately commercializing the technology.

For some patients with kidney failure, maintenance in-centre haemodialysis will always be the preferred treatment, and despite incentivizing policy levers, they will not be interested in pursuing home dialysis or kidney transplantation. In-centre self-dialysis also referred to as empowered haemodialysis originated in Sweden, when a young engineer named Christian Farman returned to haemodialysis in after a failed transplant.

Farman began negotiating with his nurses to perform his own dialysis treatments with staff supervision and caught the attention of other patients Eventually, the process of self-dialysis within this centre — whereby coaches in the dialysis unit train people to take over control of their own treatments and health — grew so popular that a new unit was built at the hospital for self-dialysis patients only, with patient input into the design of the unit.

Since then, self-care units were installed in several haemodialysis units in Europe and the USA, offering patients the autonomy and flexibility of home haemodialysis within the safety of a controlled environment.

This approach to empowering patients has not been widely used to date, but deserves rigorous study and evaluation Telehealth encompasses a broader set of services such as the provision of educational content.

New technologies have broadened the scope of telemedicine and telehealth applications and services, making these tools more accessible and useful in the care of patients who live remotely or have difficulty visiting a clinic. The range of services that can be delivered by telehealth now includes two-way interactive video, device data programming, asynchronous messaging , sensors for remote monitoring and portals to enable patients to access electronic health records.

Although relatively understudied in haemodialysis patients to date, telehealth has the potential to increase the acceptance of home dialysis and improve patient satisfaction, while potentially decreasing costs and improving outcomes.

Telehealth and the remote monitoring of dialysis patients has become more commonplace in the past decade, particularly in Australia, where telehealth is used widely for patients receiving home dialysis. Telemedicine is also considered a support tool for kidney care in disaster situations such as earthquakes where many individuals in remote locations can be affected. Telemedicine has also been used for distance monitoring of patients receiving PD , In the USA, the Bipartisan Budget Act of included provisions to expand telehealth coverage to include patients on home dialysis.

This legislation allows patients on home dialysis to choose to have their monthly care-provider visits take place via telehealth, without geographic restrictions. The ongoing COVID pandemic has also resulted in an unprecedented and rapid expansion in the use of telemedicine for providing health care in many regions worldwide, including for the care of patients undergoing in-centre haemodialysis.

The experience gained during this pandemic has the potential to permanently embed telemedicine in health-care delivery in many health-care systems. Although telehealth has considerable promise for the care of dialysis patients, the implementation of telehealth in clinical practice can be challenging The European Kidney Health Alliance EKHA is a non-governmental organization based in Brussels, Belgium, which advocates for kidney patients and the nephrology community at relevant bodies of the EU and also at European national organizations.

The EKHA represents all of the major stakeholders in kidney care, including physicians, patients, nurses and foundations. Of note, according to the treaty of Lisbon , health-care systems are the responsibility of the national authorities of EU countries, which limits the role of the European Commission to one of complementing national policies and fostering cooperation.

The EKHA has undertaken several initiatives in the area of kidney care, mainly focusing on measures to decrease the costs of kidney care while maintaining quality of care and access for all appropriate candidates, and to reduce demand for dialysis by promoting efforts to prevent the progression of kidney disease, and encouraging kidney transplantation as the KRT of choice 66 , This initiative, called Beating Kidney Disease Nierziekte de Baas will promote four specific research areas : prevention of kidney failure, including root causes such as other chronic diseases; personalized medicine including genome and big data analyses, and studies of rare diseases; patient-centred outcomes and quality of life, transplantation and home haemodialysis; and regenerative medicine including bio-artificial kidneys.

Similar to European initiatives that have promoted transplantation , , , these efforts will emphasize shifts in policy action to strengthen institutional frameworks, improve education, training and information, optimize registries, and ensure appropriate benchmarking in nephrology.

The past 50 years have seen rapid changes in how and to whom dialysis is provided. From a global perspective, the escalating numbers of patients who require dialysis mean that even current costs are not sustainable, and yet most people who develop kidney failure forego treatment owing to a lack of access, with millions of lives lost every year as a consequence.

Also important, the limitations of current dialysis treatment in alleviating patient suffering, morbidity and mortality are now viewed as unacceptable. Consequently, patients, payors, regulators and health-care systems are increasingly demanding improved value, which can only come about through true patient-centred innovation that supports high-quality, high-value care.

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