Tips for Supporting PD Retention

One challenge to increase use of peritoneal dialysis (PD) is to successfully match more patients to the therapy. Another challenge is to help them stay on PD once they choose to begin.

Each day for the past few years, I’ve spent an hour or so co-administering the 5200+ member Home Dialysis Central Facebook discussion group with our moderation team of patients, care partners, and clinicians—and monitoring several other kidney disease and dialysis-related Facebook groups with a combined tens of thousands of users. I am not a clinician. But, across these groups, I’ve observed themes that may help shed some light on what causes PD dropout and what may help.

A prospective trial of 1,303 people with stages 3 and 4 CKD found 87% to be medically suited for PD,¹ though only 10.4% of American patients receive it.² For those who do begin, there are a variety of medical and psychosocial reasons for “technique failure:”

Catheter issues. Some PD catheters seem to have minds of their own. They drift from place to place like eels, snag on loops of bowel, cozy up to bladders, and otherwise cause pain and suffering for their unhappy hosts. Solutions:  Patients tend to have limited patience for multiple procedures to accomplish the same purpose, so finding an experienced, trustworthy surgeon who values PD access is critical. It may be possible to non-surgically reposition a catheter over a wire, stitch it into place, or replace a coiled model with a statistically-likely-to-be-less-problematic straight one.³

Pain. There are three main types of day-to-day PD pain. Drain pain is often mentioned in colorful terms. Men report things like, “Feels like a hand is inside me gripping and twisting my nuts and then like someone trying to cut off my manhood,” or, “It’s like Edward Scissor-Hands has his fist full of blades shoved up my taint.” One woman said,“It felt like a labor contraction!” Some patients have burning inflow pain when they instill the PD dialysate. And, accidentally getting air in the lines causes miserable shoulder pain that can take days to fully ebb. Take pain as seriously as your patients do. Ignoring or downplaying pain is a recipe for increasing PD dropout. Solutions: Preventing constipation is, of course, important for anyone on PD. A tidal setting may ease drain pain. Some find that pausing a drain cycle and standing up until the pain fades or jiggling to move the catheter helped. For others, switching to manual exchanges was the only way to get relief and stay on PD. Inflow pain is caused by the acidic pH of PD dialysate, and may be eased by altering dialysate pH⁴ with an injected buffer solution (increasing the risk of infection) or using a neutral pH solution,^5,6,7 While biocompatible PD solutions cost more, the benefits to patients and clinics of PD retention must be weighed—and these solutions may protect peritoneal membranes, allowing patients to stay on PD longer as well. Prevention through training can help avoid air in the PD catheter. Once air is present, patients say that getting on their hands and knees and lowering shoulders to the ground helps some (flexible!) patients to dislodge the air and feel better faster.

Infection. Exit site infections and peritonitis can be demoralizing, frightening, and increase the risk of a shift to HD, sepsis, and death. Solutions: PD technique can slip over time, as patients get accustomed to the exchanges and less attentive to each infection control step. In addition to solid initial training, periodic in-home visits for retraining can significantly reduce the risk of PD-related infections.⁸ (I also suspect that some patients might feel more supported at home—while others would feel like they were being spied upon.)

Body image. PD patients—male and female—may have their self-esteem and sexuality affected by the experience of having a PD catheter. “Being on PD is a forced celibacy of sorts. An engorged belly and abdominal tube and trying to explain it all is trying enough. So, I just don’t really care to ‘try’ any more.” Solutions: Use the clinic Social Worker as a resource—home patients are entitled to the same level of social work services as in-center patients, and body image is a very common issue with PD patients. Offer resources like this Life@Home article or the Kidney School Sexuality and Fertility module. And, encourage patients to ask other PD patients how they cope. (Facebook is very helpful for frank discussions about topics like this.) They will find a range of responses from, “Sex? What’s that?” to inspiring examples of people who are dating, finding love, and thriving sexually and otherwise on PD.

Time contraints. As PD adequacy drops, cycler prescriptions can get longer and longer. I’ve

seen posts from patients who must be connected to a cycler for 12, 13, even 14 hours each night. Not surprisingly, they feel as if they don’t have lives. One daughter reported, “My dad is talking about switching to hemo from PD. He can't stand being attached to the machine all the

time and his mental health is in a spiral.” Solutions: Ask patients what matters to them and adjust the prescription accordingly. Dr. Joanne Bargman wrote a terrific summary of patient-centered cycler prescription options. Offer an extension line to give patients an extra 12-20 feet of freedom. Help patients reframe the added time. One said, “When my prescription moved to 11 hours, I was very depressed. Then I started finding things to keep busy and using it as more of a ME time, which has helped a lot.” A daytime fill with Extraneal® (more costly) may help someone stay on PD who would otherwise have to transfer to HD.

Dealing with supplies. Fear of a medicalized home keeps some patients from choosing PD in the first place. Even once prepared, the sheer volume of a first supply delivery tends to be a shock. Beyond the space that supplies take up, being home for delivery and scheduling issues can be an ongoing hassle. Moving heavy boxes can be a PD deal-breaker, especially for patients with comorbidities or mobility challenges.

Dedicated delivery company drivers will deliver upstairs and rotate stock; common carriers like FedEx and UPS may just leave a pallet of supplies on a front stoop. In the rain… Disposing of PD waste adds another layer of concern. Heavy dialysate bags require sturdy boxes, but they take up space, are difficult to break down, and the plastic medical waste must be specially bagged in some areas. Patients feel awash in trash. Solutions: On-demand PD fluid would solve many of the delivery and trash problems, and Baxter began a human clinical trial last month. Meanwhile, the book, Arranging Your Life When Dialysis Comes Home, by Dr. Linda Gromko, has helpful suggestions, and you can encourage patients to join Freecycle.org in their area. Sturdy boxes are always in demand for storage or moving, and can be picked up from a front porch without the need to even meet strangers.

When All Else Fails, Consider Home HD

Hemo dread is very real among many PD patients, and I’ve seen people refuse to switch to HD after PD stops working—sometimes for so long that they don’t survive. But, nearly everyone in the Facebook groups seems to believe that all HD is the same as they experienced in-center when they first started dialysis. They typically don’t realize that home HD can help them feel better and perhaps live longer. Longer cycler times, additional exchanges, infections, and a need for higher concentration solutions should prompt modality education and a “next steps” discussion. With luck and good timing, a kidney may come through before a peritoneal membrane wears out. But, if not, the chance to live WELL even if not on PD may make home HD a good choice.