Abstract
Background
Peritoneal dialysis provides several benefits for patients and should be offered as first line kidney replacement therapy, particularly for fragile patients. Limitation to self-care drove assisted peritoneal dialysis to evolve from family-based care to institutional programs, with specialized care givers. Some European countries have mastered this, while others are still bound by the availability of a volunteer to become responsible for treatment.
Methods
A group of leading nephrologists from 13 European countries integrated real-life application of such therapy, highlighting barriers, lessons learned and practical solutions. The objective of this work is to share and summarize several different approaches, with their intrinsic difficulties and solutions, which might helpperitoneal dialysis units to develop and offer assisted peritoneal dialysis.
Results
Assisted peritoneal dialysis does not mean 4 continuous ambulatory peritoneal dialysis exchanges, 7 days/week, nor does it exclude cycler. Many different prescriptions might work for our patients. Tailoring PD prescription to residual kidney function, thereby maintaining small solute clearance, reduces dialysis burden and is associated with higher technique survival. Assisted peritoneal dialysis does not mean assistance will be needed permanently, it can be a transitional stage towards individual or caregiver autonomy. Private care agencies can be used to provide assistance; other options may involve implementing PD training programs for the staff of nursing homes or convalescence units. Social partners may be interested in participating in smaller initiatives or for limited time periods.
Conclusion
Assisted peritoneal dialysis is a valid technique, which should be expanded. In countries without structural models of assisted peritoneal dialysis, active involvement by the nephrologist is needed in order for it to become a reality.
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Introduction
Peritoneal dialysis (PD) provides several benefits for patients and should be offered as the first kidney replacement therapy when pre-emptive kidney transplant is not feasible, particularly for fragile patients [1]. Over the years, numerous barriers hindering PD initiation have been identified. As barriers have arisen, solutions appear in the same proportion of the imagination and resources of the nephrologist. Limitations to self-care drove assisted peritoneal dialysis (asPD) to evolve from family-based care to institutional programs, with specialized care givers. Since the first report of asPD was published in Europe [2], things have evolved, but important inequities in healthcare systems still persist. Although asPD has been available and widely used in some European countries for many years now, it remains unavailable or poorly utilized in many others [3]. Some European countries have overcome this, while others are still bound by the availability of volunteers to become responsible for treatment, otherwise, in-center hemodialysis (HD) becomes inevitable. A recent survey among European nephrologists revealed that around 40% of PD centers had no access to asPD [4]. In a recent paper requesting a call to action for increased and equal access to PD based on Assisted PD, a group of leading nephrologists from several western European countries formed a group to drive increased availability of asPD in Europe and in their own countries [3]. From this collaboration, insights were provided into the main advantages and obstacles to PD for older, frail people; different global models of assisted PD delivery were compared, and the experience of asPD across 13 European countries was shared.
In this context, the same panel of specialists amalgamated real-life application of such therapy, highlighting barriers, lessons learned and practical solutions. Each experience is unique, but each one of them is focused in providing the best care to a non-autonomous patient for PD technique. The objective of this work is to share and summarize several different European approaches, with their intrinsic difficulties and solutions, which might help each PD unit to develop and offer asPD on a regular basis.
Methods
Against this background, some of the leading nephrologists from several western European countries formed a group to drive increased availability of asPD in Europe and in their own countries. This panel included one or two nephrologists/country, from 13 different countries. The meetings started in 2021 in response to the need to increase access to asPD across Europe. These meetings were virtual, timetabled and sponsored by Baxter Healthcare (Europe). As part of this initiative, each member of the group provided information about the use of asPD in their own center and country, barriers to further developments and priorities to enable expansion of access to asPD. Each panel member was asked to contribute with a case report to illustrate barriers, advantages, lessons learned and practical solutions, etc. These illustrative examples were compiled based on the different strategies that might augment asPD availability.
Results
We describe 13 representative cases (Table1) and profiles (Table 2) for assisted PD in some countries in Western Europe. Even though healthcare systems are different and there are different social and cultural approaches, we can define some shared aspects that allow us to determine similar causes, circumstances and possible solutions for patients with end-stage kidney disease (ESKD).
Patients
Starting kidney replacement therapy for ESKD patients represents an important patient biographical breakdown that will determine their quality and span of life. In this environment and taking into consideration that ESKD is a life-threatening condition, peritoneal dialysis is in many cases the best possible treatment available and in many others the only possible treatment [5, 6].
Assisted PD has been strongly associated with older age, and although it is an important related factor, asPD is not only advocated in such condition, but actually encouraged in a broader range of non-autonomous candidates for PD. An increasing number of ESKD patients suffer from a physical or mental disability preventing adequate PD treatment implementation or performance. Frailty encompasses other dimensions that have been operationally defined by Fried et al. as meeting three out of five phenotypic criteria indicating compromised energetics: low grip strength, low energy levels, slowed walking speed, low physical activity, and/or unintentional weight loss [7].
When asPD is not available, older age and comorbid conditions can be considered contraindications for PD [8]. To respect the patient’s shared decision-making, after adequate information and presentation of available solutions, the patient might be compelled to decide for palliative treatment, as long as they do not have to spend most of the day, three days a week in a hemodialysis center often complicated by transportation issues due to disability. This is another reason to raise awareness to asPD availability, as it should be possible to offer it to these patients.
Social environment
One of the most important and different factors between countries, and also between patient cases, is the social structure, the family structure, and relationships. Some patients have an adequate and structured social environment that, at least at the beginning, or in specific situations such as intercurrent illnesses, allows them to structure an asPD plan without any external support. Others can afford (and pay for) a professional caregiver to support the asPD therapy. Many patients, eventually, are candidates for external support for their PD treatment and the asPD should be a structured program available through the healthcare system.
Healthcare systems
We analyzed different healthcare system models, public, private, and combined, and most of them are unable to offer adequate support to these patients. Although asPD has been available and widely used for many years in some European countries, including France, it remains unavailable or poorly utilized in many countries due to an evident lack of support from healthcare systems. In fact, AsPD is not available in many European countries because there is no funding for assistants in the community.
France has the longest and largest experience of asPD [9, 10] using private community nurses funded by the healthcare system to support patients predominantly on manual continuous ambulatory peritoneal dialysis (CAPD) 3–4 exchanges/day. Patient care is maintained by groups of 3–4 nurses with PD experience as they need to visit each patient for each exchange. They are responsible for every connection and disconnection, with the exception of APD patients who are trained to disconnect in the morning.
In many countries, though, the availability of resources for asPD patients depends more on the will and determination of healthcare professionals than on the healthcare system model. In some, even that model prevents any type of home-based assistance.
PD therapy
Peritoneal dialysis is a self-administrated home therapy. Patients stay at home, adapting the therapy to their lifestyle, and maintaining the best possible quality of life while at the same time benefiting from the best morbidity/mortality results. These patients can lose all these benefits due to a temporary or permanent socio-sanitary situation. Peritoneal dialysis therapy is usually prescribed 7 days a week in a manual CAPD regimen, with different exchanges during the daytime or in an automatic regimen (APD) with exchanges during sleep..
Discussion made the panel of experts aware that asPD patients can benefit from a flexible and individualized prescription whereby patients, following current guidelines [11], can maintain an adequate balance between quality of life and clinical results. Incremental PD prescription allows for slower decline in residual kidney function. This feature will enable days off PD, so PD, and therefore the assistance, may only be required 5–6 days a week.
New technologies are emerging, with remote monitoring of PD treatments on APD, allowing quicker communication of treatment data with the health care team, thus improving quality of assistance, and virtual reality being used to train assistants. In Germany, some PD training teams are already using virtual reality to train PD patients. This way, the training of the trainers can be done in a resource-saving way and can be repeated as often as needed. It offers a standardized learning protocol in which individual steps can be taught separately and then put in the right order [18,19,20]. In Italy, the possibility to teach PD patients remotely by video training has proven to be as effective as home training, while significantly reducing the number of home visits, and can be a powerful tool as an alternative type of assistance in PD [21,22,23].
Assisted peritoneal dialysis
Assisted PD is defined as PD performed at the patients’ home with the assistance of a health care technician, a community nurse, a family member, or a partner [12]. There are some well-known characteristics of asPD patients compared to patients undergoing self-care PD, such as lower risk of transfer to hemodialysis, a higher risk of death, and a lower probability of transplantation [13].
Furthermore, we have found that asPD is an adequate therapy for (1) offering PD benefits to patients previously classified as “no candidates to PD” (2) allowing kidney replacement therapy when PD is the only indicated or available therapy (3) maintaining patients on PD therapy and thus avoiding unwanted therapy discontinuation (4) providing an adequate temporary solution for ensuing patient problems.
Discussion
The advantages of using home PD as compared to in-center HD [3] have been identified, and include preservation of residual kidney function and more cost-efficient dialysis modality, to name a few. In relatively fit older patients who can manage PD themselves, illness intrusiveness is lower on PD compared to matched patients on in-center HD [14]. Nonetheless, the inability to perform self-care is often a barrier to PD at home. Assistance is therefore needed and can be provided by a family member or paid healthcare worker; it is available in many countries worldwide and is mostly reimbursed by the healthcare system.
In 2021, this group of European nephrologists identified major barriers to the use and growth of asPD, namely overall attitudes towards PD, referring to the need for nephrology team education and/or patient education and involvement in dialysis modality decision making [3]. Secondly, the need for involvement with healthcare policymakers regarding recognition and financial support of community care is of particular importance in countries where no reimbursement for assistance exists [3]. Finally, the need for collaboration among PD units so that expertise with asPD can be shared, led to this work exposing some myths, detecting some challenges and sharing solutions found by others.
Assisted PD does not mean 4 CAPD exchanges, 7 days a week, nor does it exclude cycler, and many different prescriptions might work for our patients. For instance, supportive two-exchange asCAPD for older frail individuals can improve symptoms and can be an acceptable dialysis modality [15]. Indeed, this was adopted in case eleven (Table 1) as a feasible alternative allowing this patient to avoid in-center HD. Tailoring the PD prescription to residual kidney function and maintaining recommended levels of small solute clearance reduces dialysis burden and is associated with higher technique survival [16].
Assisted PD does not mean assistance will be needed permanently. It can be seen as a transitory event towards individual or family caregiver autonomy, full or partial, as in the eighth case (Table 1). Initiation of home-based therapy might be made more difficult by several factors, such as the initial lack of concentration during PD training in uremic patients, the emotional fear of therapy responsibility or even the existence of a transitory physical condition. Guaranteeing initial home support could in several cases be the answer to PD choice. For example, many of our patients rely on a partner to help at first, and then feel assured that they are capable of such task. These fears are higher if the patient lives alone. Home-support can also be needed for prevalent patients, often on a temporary basis, e.g., after an acute event, partner illness, caregiver holiday [17]. Also, for some patients, assistance can be reduced to one visit a day in APD patients, in most cases only for cycler set-up, thereby reducing AsPD-related costs.
In countries without global models of asPD, family support is not the only feasible option for assistance. As in the second case (Table 1), if the patient has sufficient financial means, private care agencies can be used to provide assistance. Other options may include implementing PD training programs for the staff of nursing homes or convalescence units. Social partners may be interested in participating in smaller initiatives or for limited time periods.
Assisted PD, however, in countries without global models of asPD, will never be a reality if the nephrologist does not take it into consideration. It must be in the nephrologist’s portfolio to offer and to be talked about; then families, patients’ associations, society and government can take responsibility for assuring care. Several valuable lessons and points of learning come about through normal patients, who challenge our ability to offer them the best solution (Table 1). Table 2 clearly shows the lack of coordinated asPD programs, with family or paid private caregivers taking on the care of these patients. However, the difference in the ease of providing transport and in-center HD compared to all the efforts needed to maintain and respect the initial choice of dialysis therapy of our patients is truly amazing (Table 3).
Data availability
Not applicable.
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AMG.: Baxter Healthcare – speaker fees. EAB.: Baxter Healthcare—advisory board and speaker fees; LiberDi, AWAK—advisory boards; Vifor–speaker fees. GJM Baxter Healthcare—speaker fees. MW Baxter Healthcare—advisory board and speaker fees; Fresenius Medical Care—speaker fees. BK speaker fees: Baxter and Fresenius Medical Care. UHL speaker and consultancy engagements for Baxter Healthcare. AE Advisory Board Boehringer Ingelheim, AstraZeneca. The results presented in this paper have not been published previously in whole or in part.
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Malho Guedes, A., Punzalan, S., Brown, E.A. et al. Assisted PD throughout Europe: advantages, inequities, and solution proposals. J Nephrol 36, 2549–2557 (2023). https://doi.org/10.1007/s40620-023-01765-y
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DOI: https://doi.org/10.1007/s40620-023-01765-y