Quality Of Life: Decisions That Affect Peritoneal Dialysis Patients
When patients are faced with the decision to choose a dialysis modality, many questions may come to their mind. As physicians, we always focus on the question, “Which dialysis modality will provide the best chance of survival for my patient?” Patients and their caregivers, however, have many other questions that ultimately affect their decision to choose one modality over another. Patient-centered research in nephrology, particularly around dialysis modality choice, is not very robust. To help identify the priorities of patients and caregivers for outcomes in peritoneal dialysis (PD) specifically, a recent article surveyed a group of PD patients and their caregivers from three different countries. The top concerns expressed by the patients and their caregivers were PD infection, mortality, fatigue, flexibility with time, blood pressure, PD failure, ability to travel, sleep, ability to work and effect on family. Interestingly, in the United States, mortality ranked 15th among the top priorities for PD patients and their caregivers. Clearly, the message is that patients and caregivers are considering quality of life (QOL) as a major deciding factor when it comes to dialysis modality choice.
Contributors to quality of life
Sleep: Most dialysis patients want to know whether doing PD at home would affect their sleep, particularly since they would be doing it at night with their cycler. One small study compared sleep habits between PD and hemodialysis (HD) patients using the Pittsburgh Sleep Quality Index and found that patients on PD had better quality of sleep. Patients who choose PD as their modality have the choice of continuous ambulatory peritoneal dialysis (CAPD) or continuous cyclic peritoneal dialysis (CCPD), which allows the patients to choose the option that may be less disruptive to their day or night habits, particularly their sleep habits.
Flexibility with time and work: Frequent travel to and from the dialysis unit is another reason patients may choose a home modality versus an in-center modality. Many patients also work, and dialysis may be disruptive to their work schedule. Frequently taking off from work may be problematic for their employers depending on the type of work that they do. Patients who live in rural or underserved areas may have a more difficult time getting to an in-center facility. PD may be a great option for these patients, and with new regulations and technology available, telehealth can help decrease the number of visits these patients will need to travel. Using telehealth, a physician and patient can still communicate, conduct a virtual physical exam, review laboratory testing results, and make changes in their treatment plans without the patient having to drive to the dialysis center as frequently. In addition, with new changes in the Center for Medical & Medicaid Services (CMS) guidelines regarding reimbursement for telehealth, nephrologists will now be able to see their patients more regularly throughout the year using new telehealth platforms.
Social relationships: Patients want to develop new and maintain old relationships with friends, family and coworkers. Dialysis can make that difficult in some ways since patients are required to adjust their lifestyles to their dialytic therapy. Researchers surveyed both PD and HD patients and showed that overall, non-family networks decreased for both groups. However, they found that patients with larger social networks had lower anxiety, and patients with closer and more satisfying relationships had better psychological wellbeing. They also found that PD patients had larger networks and received more social support than HD patients. This may take into account that PD patients are not in a dialysis unit multiple times a week, which gives them the opportunity to be out in their community, allowing them to develop these critical social relationships.
Diet: Geographic and cultural differences vastly affect the diet for patients and therefore is another major consideration for patients when choosing their modality. Hypokalemia is a known effect of PD (whereas hyperkalemia occurs frequently in HD). This allows many PD patients to have a much more liberal diet when it comes to potassium-containing foods. In fact, most patients are encouraged to eat more of the potassium-containing foods that are often the frequently desired foods for most patients (e.g., tomatoes, potatoes, oranges, berries and bananas). Since PD patients also dialyze each night, they are better able to regulate their fluid status. This typically allows a bit more flexibility when it comes to fluid intake each day than that of the HD patient.
Sexual health: Overall, sexual health is not well studied when comparing different dialysis modalities. In one study, both patients on PD and HD were noted to have sexual desire disorder. This finding was present pre-dialysis, but after starting dialysis, there was some improvement in the PD patients compared to HD patients, although this was not statistically significant. Self-esteem was also low in both patient groups as well, but were shown to be lower in patients on HD.
Ability to travel: Recently, a young PD patient of mine got married. For her honeymoon, she planned to take a seven-day cruise in the Caribbean from our local port. Six weeks before her trip, I provided her with a letter stating that she is on PD and will require her cycler to be taken with her on the ship. Prior to her arrival, her supplies were delivered to the ship. Once she arrived in her room, her supplies were brought to her, and she was able to dialyze each night in the comfort of her room, while enjoying her honeymoon with her husband and traveling through the Caribbean. As a reminder, many government payer plans do not cover the cost of home treatments performed internationally, so home patients should be made aware they may be responsible for out-of-pocket costs during such travel, and backup treatment plans should be made with the treating nurse before departure.
Dialysis modality choice is an important step in the transition from pre-dialysis to dialysis for chronic kidney disease patients. Asking the patients about what matters most to them can help in shared decision making for the patient, the caregiver and the provider to help the patient make the choice that fits best with their lifestyle and provides the quality of life they deserve. Asking questions about work, diet, sleep, sexual function and travel may help patients find comfort in their choice. Ultimately, dialysis should revolve around the patients’ lives, not the other way around. PD offers many patients the flexibility to do just that.