Opportunities and challenges in expanding access to peritoneal dialysis: A qualitative study in Latin America

Demographic and facility information survey

The paper-based survey was adapted from standard health care service assessments.^25–29 Members of our research team (CFB, NCW, BC) drafted, refined, and reviewed the survey questions. Translation was conducted by a research assistant fluent in English and Spanish. The survey included 41 multiple choice and short answer questions in the categories of general participant and healthcare facility information, utilities, supplies and equipment, and kidney care. A blank copy of the survey is included in Supplemental File 1. Due to the small number and inherent selection bias of SYL training participants, we used survey data only to support the demographic characteristics of the interviewees and gain context for the facilities in which they worked. A complete summary of the survey data is included in Supplemental File 2.

Interviews

Interviews were semistructured and open-ended, using the following topic guide, which our research team used previously in a study of PD programs in Zimbabwe. ²⁰

An account of the current KRT program model, including the broad process and detailed case examples.

Topics 1 and 2 aimed to answer RQ1 to establish the general logistics of existing KRT programs in LA, with follow-up questions used to understand the specific experiences of SYL trainees working as healthcare providers within these programs. Topics 3–5 connected to RQ2 and sought to uncover participants’ ideas and concerns around PD programs. The concentration on PD was due to the context of the study (performed during an acute PD training, conducted by researchers and with participants who had interest in PD). Follow-up questions to topics 3 and 5 tended to focus on challenges around PD fluid access because this was an experience shared by many participants, was a component of the SYL workshop, and has been previously identified as a primary barrier to PD program expansion.^20–24 To inform the Wright Lab's technology development, topic 4 explored participants’ reactions to the in-hospital PD fluid production concept, potential concerns, and desired features.

Two researchers (NCW, CFB) conducted all interviews as a pair or alone. Verbal consent was obtained for each interview and for audio recording. Six interviews were conducted in English, and nine were conducted in Spanish with a translator. Most participants were interviewed individually, except for two instances in which participants were interviewed in pairs due to time limitations. Interviews ranged from 20 min to 60 min. Data collected from the interviews included audio recordings and interviewer notes.

High cost of dialysis

Thirteen participants worked in public facilities, but just seven were completely free for patients. Participants were divided about the sufficiency of government funding. Public funding was “not always able to provide everything,” and “there are some specialist services that you can only get privately.” Even in public facilities, patients often still paid for some services. There were cases in which “the government insurance can never cover dialysis because it's too expensive” or public services were oversaturated. When public facilities only had capacity for 1–2 weekly HD sessions, patients had to pay for additional private sessions or remain underdialyzed. Public funding also did not always cover nondialysis services, such as blood work. Conversely, several participants’ facilities were sufficiently funded, “so the patient doesn't pay anything.” All participants agreed that dialysis was too expensive regardless of payer. One HD session cost 60–100 USD in Guyana, 112 USD in Ecuador, and 180–250 USD in Haiti. PD cost 1300–1450 USD monthly in Ecuador. PD fluid bags cost 3–4 USD for 2 L in Guatemala and 4.2 USD for 1 L in Bolivia. PD typically cost the same as or more than HD at participants’ facilities because “they have to import everything. The catheters, the bags, the fluids, everything, and so the cost increases.”

Geography restricts access

Specialty care in LA was typically centralized in large cities. Patients outside major cities had difficulty accessing timely nephrology services and faced geographic barriers to maintaining in-hospital dialysis. They may “have to leave their families or their children or cities to come and stay in [the capital].” Otherwise, patients had to travel for each treatment, with some “kids coming for dialysis who drive 4 hours each way to get to the dialysis.” Patients traveling far “often don't do the therapy correctly, they'll only receive three sessions” before dropping out. Difficult terrain and infrastructure compounded distance challenges. Participants described mountainous regions, unpaved roads, and areas “only accessible by boat” or “by plane ride.” “There are other centers, but they’re still far away. Three, six hours away … The roads aren't even paved, so it can be much, much longer.” Because participants largely represented urban areas, their experiences may underestimate geographic barriers to dialysis in LA.

Equipment and supplies are unavailable

Challenges around equipment and supplies commonly limited the availability of dialysis. HD capacity was primarily determined by equipment availability. “The volume of patients is too high. And the machines. They don't have enough machines.” HD machines were often broken, and some hospitals had difficulty sourcing technicians. Many hospitals either restricted the number of dialysis patients or provided patients with only one or two weekly HD sessions. PD capacity was limited by availability of supplies, mainly PD fluid. Supplies were usually imported, leading to delays, uncertainty, and high costs. In Guyana, PD fluids were usually free “except when we have no dialysis fluid or there's a shipment delay or all of it expired.” In Jamaica, they purchased from a supplier that imports, and “the importation process takes very long. It takes like three months.” Fluid manufacturers included Baxter; Fresenius; PiSA; and smaller manufacturers from India, Russia, and Egypt. Peritofundin PD fluid was manufactured locally in Bolivia. One participant from Bolivia noted that they were only able to obtain 7% glucose fluid, much higher than standard prescriptions. Many participants, particularly those with small or ad-hoc PD programs, faced limited fluid composition availability, so “we’re just doing dialysis, but we’re not doing efficient dialysis.”

Lack of specialists

General practitioners and pediatricians made referrals to nephrology, but “there's no training … many of the chronic patients should have been referred earlier.” Specialist services were limited, and three participants worked at the only “referral center for the whole country,” “so everybody is sent there for critical care.” Nephrologists did not have the capacity to serve everyone that needed care. Several participants completed nephrology fellowships outside of their countries, which suggests a lack of in-country training opportunities that may have contributed to the small number of nephrologists in LA.

Staffing limitations particularly affected pediatric patients. Even when there were specialists trained in adult dialysis, “nobody wants to touch children.” In many hospitals “there are no pediatric nephrologists. They don't do any pediatric patients. They have to refer them.” One participant worked at “the only center in [the country] that offers chronic dialysis for children.” Three other participants’ facilities offered no pediatric nephrology services, so “they need to refer [children] to another hospital.” In addition to staffing limitations, the low availability of PD in many facilities contributed to lower pediatric dialysis access than adult dialysis access.

Motivated to expand PD

Participants all expressed similar motivations for PD use. They cited evidence “that in the first three years the survival rate is higher for peritoneal dialysis, better quality of life.” From their experience, PD “preserves the residual kidney function more, it's more gentle.” Participants saw PD as a pathway to reach patient populations that currently lack access. They “are regularly seeing children in need of dialysis” for whom HD is not an option. PD could also help decentralize dialysis, either for short-term care before transferring patients or for long-term care closer to patients’ homes. In places where HD machines have limited capacity, PD “would allow them to kind of reduce the load.” Participants were motivated by PD's potential for lower costs because cost was an issue even in places with adequate dialysis access. “We have an already established program–but very expensive.” However, those with both HD and PD stated that PD costs are currently similar to or greater than HD, “so the idea is how do we lower that peritoneal dialysis cost so that the savings could be more?”

Concerned about expanding PD

Participants also shared concerns with expanding PD. Anticipated staffing challenges included a “lack of nursing staff training” and a “lack of training in placement of peritoneal catheters.” Trained nurses are needed to conduct fluid exchanges for acute patients and home visits for chronic patients. Several participants’ facilities did not have any nephrologists or surgeons trained in PD catheter placement (although participants were being trained in catheter placement as part of the SYL workshop). Because many participants already faced sourcing issues, they were concerned about continuing importation costs and delays making PD programs difficult to sustain. “The government doesn't supply PD fluids or catheters, and this is the main concern” with starting a PD program. PD fluid was the most common supply concern for participants, followed by PD catheters.

Patient factors, including home environments, infection risk, and training, were also concerns. Requirements for home PD programs, which would exclude some patients, were “access to water, light, and that the floor is finished … And there not being any animals.” Several participants discussed infections being common the few times they had done PD. “The catheter will always be infected or there will always be peritonitis.” Participants worried about training patients to maintain sterility because many of their patients were undereducated and “even people who are really, really good at it, really good at care, still get peritonitis.” Despite PD's potential to expand dialysis access, there would still be patients for whom PD is infeasible.

Prepared to expand PD

Participants discussed plans to address these concerns and expand PD in their contexts. Participants intended to use telehealth services to closely monitor home PD patients, helping to overcome geographic barriers and patient training concerns. The participants were all SYL workshop attendees and planned to share their PD training with others at their facilities. They also discussed plans to “start with training programs for general physicians to train them on when to refer.” One participant wanted their head nurse and other staff to receive training outside their country “because a lot of people who've never left, they think that what we do is normal and optimal. And so when we leave and we go to these other places, then we realize, you know, there's so much room for improvement.”

Participants shared ideas for partnerships to improve PD affordability. Government buy-in will be critical in public facilities and countries with nationalized healthcare. The private sector will also play a role, even in public services. In Ecuador, for example, most dialysis patients were at private centers, so nephrologists at public centers recognized the need to collaborate with private centers to promote and support PD use. Existing pediatric PD programs in Jamaica and Guatemala received private foundation support. Similar to these successful models, other participants planned to engage local kidney foundations and establish public–private partnerships to offset costs.

Desire for domestic PD fluid production

Finally, participants wanted “domestic production [of PD fluid] to lower the cost,” improve reliability, and expand PD to smaller and rural facilities. Even for the few participants that were “not in huge need for dialysis fluid, we really need to decrease the costs and maybe think out of the box … with PD fluids produced locally.” Participants expressed interest in the in-hospital PD fluid production technology proposed by the Wright Lab at the University of Minnesota as long as the fluid cost is competitive with HD. Participants also wanted the ability to make multiple fluid compositions (e.g. multiple glucose concentrations, bicarbonate-buffered). While they would like the fluid shelf life to be as long as possible, requirements depended on the use case. For example, one participant gave a preferred shelf life of 10–20 days for acute PD but longer for chronic PD. Another participant preferred a two-month shelf life if producing fluid at one hospital, but one month would be sufficient with production in multiple hospitals around the country.