Lifesaving But Not Perfect: Addressing Sleep Health in Patients on Dialysis

Any complex medical procedure impacts a patient’s quality of life, especially in terms of sleep, and dialysis is no exception. It is only in recent years that healthcare providers have begun to recognize the importance of interdisciplinary care for patients undergoing dialysis.

With kidney disease on the rise and now the fastest-growing noncommunicable disease in the US, rates of kidney failure are also increasing. Current estimates from the American Kidney Fund project 35.5 million US adults have kidney disease and 808,000 are living with kidney failure requiring a transplant or dialysis.¹

While kidney transplantation generally offers better quality of life and longer life expectancy compared to dialysis, > 93,000 patients are currently on the kidney transplant waitlist. Due to a shortage of donor kidneys, many patients with kidney failure must rely on dialysis as a bridge to transplantation.^1,2

Although dialysis is considered a necessary, life-sustaining treatment option for advanced kidney disease, it is a physically and mentally exhaustive obligation often associated with underrecognized, burdensome symptoms related to sleep and psychiatric health. Studies have uncovered approximately 25% of patients undergoing dialysis experience depression.³ However, in the absence of universal or standardized routine symptom assessment in dialysis care, identification and management of such symptoms are often suboptimal and overshadowed by a focus on numerical targets for laboratory measures directly related to kidney health.⁴

“Some patients hesitate to discuss the physical and mental symptom burden of dialysis with their healthcare team because the greater focus tends to be on their kidney health,” Jocelyn Cheng, MD, vice chair of the Public Safety Committee at the American Academy of Sleep Medicine and a neurologist in Nutley, New Jersey, told HCPLive.

Conversations surrounding interdisciplinary care in dialysis care started taking off in May 2022 when the Kidney Disease: Improving Global Outcomes (KDIGO) held a Controversies Conference on Symptom-Based Complications in Dialysis to determine the best practices for diagnosing and managing both physical and mental symptoms in patients undergoing maintenance dialysis. The organization recommended nephrology-led multidisciplinary care, with regular and tailored symptom screening using patient-reported outcome measures. They also emphasized the need to integrate these assessments into medical records for clear communication and called for research on the cost-effectiveness of symptom management programs.

“While treatment is lifesaving, it is by no means perfect and people often have a high symptom burden, whether it's due to the illness, dialysis, or any of the many medications that most people with kidney failure need,” Daniel Cukor, PhD, an associate professor of medicine and psychiatry at the NYU Grossman School of Medicine, said to HCPLive, describing the “substantial toll” dialysis can have on patients’ quality of life.

Kirsten Uzzardo, a patient advocate and 3-time kidney transplant recipient who has spent years on dialysis, has experienced the challenges of kidney failure treatment firsthand. Diagnosed with a rare kidney disease at age 18, Uzzardo received her first kidney transplant 5 years later at the age of 23 and lived with a donor kidney from her mother for 18 years before needing another transplant. Unlike her first, this one “went down in flames” and lasted just 4 months, at which point Uzzardo was placed on dialysis for more than 5 years while awaiting another transplant.

Like many patients with kidney failure waiting for a transplant, Uzzardo relied on dialysis to filter waste and fluid buildup from her blood until she could receive another functioning kidney. For her, this was a years-long process during which she underwent multiple kinds of dialysis, including in-center hemodialysis and peritoneal dialysis.

“When they removed the toxic kidney [after my second transplant], I immediately said, ‘Please put in the catheter for the abdomen that allows you to do [dialysis] at home,’” Uzzardo recalled, describing how she ultimately had to do months of hemodialysis in-center and at home with the assistance of a nurse before transitioning to peritoneal.

Although it has been years since she was last on dialysis, Uzzardo remembers the fatigue associated with her treatment, describing difficulty even getting up out of a chair without becoming physically ill and comparing it to trying to get out of quicksand. She noted doing peritoneal dialysis at home 7 days a week was more “gentle to the system.” At-home dialysis presented several advantages over in-center hemodialysis, yet Uzzardo acknowledged the discomfort associated with the solution inflating her abdomen, still feeling exhausted after treatment, the tedious preparation process, and sleep disruptions due to the loud noise from the machine.

“I enjoyed sleeping in my own bed, having my own TV, my own snacks, things that I needed,” Uzzardo said. “The problem sleep-wise that I ran into was my husband was working full time … [and] I never wanted to wake him. He was really carrying the burden of work and the children and their school activities. Sometimes he needed to help out with everything, so I never wanted to wake him up. It got to the point where sleep was rough. I started taking doctor-approved Benadryl each night just to try to keep myself asleep, at least during the time that he was.”

Like Uzzardo, many patients undergoing dialysis experience sleep disruptions. Strategies to cope with sleep problems depend on the exact sleep issue or what may have caused the sleep issues to begin in the first place.

Cheng emphasized a personalized approach to treating sleep issues among this patient population. Sleep issues may result from either predisposing, precipitating, or perpetuating factors.

Psychological concerns, either depression or anxiety, can predispose patients to insomnia. As for precipitating factors, the disease itself and worry about the disease can impact sleep. Perpetuating factors that may impact a patient’s sleep health include environmental issues related to going to or scheduling dialysis sessions and doctor appointments.

Patients with end-stage renal disease, especially those on dialysis, often experience significant disruptions in their body’s normal processes. In the case of sleep, the circadian rhythm, regulated by melatonin, is interrupted. The dysregulation worsens with disease severity.

“Normally, you're supposed to have a large surge of melatonin to help you sleep in the evening, and that's been shown to be disrupted in patients, on treatments like dialysis,” Cheng said.

Not only is melatonin affected but also the circadian rhythms for cortisol and body temperature.

“Your body temperature is supposed to dip as sleep approaches and then arises again as you're waking up in the early morning to morning,” Cheng said. “[If] that's also disrupted, that can throw off your sleep cycle as well.”

Cheng explained how the frequent fluid shifts caused by dialysis can provoke or precipitate other sleep-related disorders beyond insomnia. For instance, the shift in the sectional area of the pharynx, which increases narrowing at night, can lead to obstructive sleep apnea (OSA). Patients may also experience inflammatory responses that affect chemoreceptor sensitivity to the way they breathe and change their acidotic status.

Cheng continued by saying metabolic acidosis can also alter chemoreceptor sensitivity, leading to a hypocapnic response, where the body expels more carbon dioxide during sleep. This response increases the OSA risk.

Dialysis may also dysregulate certain metabolites, Cheng added. Uremia, calcium, and iron may be reduced during dialysis due to all the bloodletting and blood exchanges, and it can lead to lower levels of EPO. This can predispose someone to periodic limb movements. Although periodic limb movements are not necessarily pathologic unless they cause symptoms during the day, they can still disrupt sleep.

Metabolic disturbances also make patients predisposed to restless leg syndrome. Additionally, having lower parathyroid hormones may lead to hypercalcemia, a condition that can include some bone pain; the pain may disrupt a person’s sleep.

Cheng said each sleep disorder in patients undergoing dialysis should be treated with a standard treatment approach: insomnia with cognitive behavioral therapy, OSA with continuous positive airway pressure, and restless leg syndrome with iron replacement therapy or gabapentinoid.

The severity of sleep issues may depend on the timing of dialysis. Studies have shown when someone has nocturnal dialysis, rather than daytime dialysis, patients have a lower sleep apnea severity and better sleep quality.^5,6 Despite these findings, it is controversial if the timing of dialysis affects the severity of sleep problems as inconsistent evidence exists for restless leg syndrome or periodic leg movement disorder.

“I don't know that necessarily timing dialysis that way is strongly supported by the evidence at this point, but it is something to consider and then have your medications prescribed for dialysis-related issues affect sleep,” Cheng said.

Cheng emphasized the importance of listening to patients to ensure their symptoms are not overlooked, a sentiment shared by nephrologist Rebecca Schmidt, DO, professor and assistant dean of outreach and community engagement at West Virginia University.

“Patients have the same life changes as we have,” Schmidt said. “All of us will be patient sometimes. Having an open awareness of what's happening in a patient's life outside of dialysis might affect their ability to feel mentally and emotionally [heard].”

Cukor expressed a similar perspective, acknowledging that while all patients “want to feel heard and have a sense that their well-being is prioritized,” patients on dialysis may feel disconnected from others, including their care team. “There are many strategies that the healthcare team can employ to help improve quality of life, but it needs to stem from an open dialogue with the patient with a clear understanding of what the patient's priorities and goals are. If the patient does not share what challenges they are experiencing, it doesn't even give the treatment team a chance to try and address their needs.”

All 3 experts advocate for a multidisciplinary team approach in treating dialysis patients, with Cheng adding that sleep experts should collaborate closely with nephrologists and other specialists.

“It’s important to understand that sleep isn't just something that we should take for granted and just results in daytime sleepiness,” Cheng said. “…it has physically physiological consequences that will impact somebody's health in a very real way.”

Still, Uzzardo emphasizes the importance of patience among patients undergoing dialysis, acknowledging the difficulties associated with it but the need to persevere. To do so, she recommends finding positivity in any way they can.

“For me, it was just hanging on to everyday small things,” Uzzardo said, recalling teaching her children how to drive, seeing them graduate, and other experiences with her family. “The other thing is to keep [in mind], especially if someone is new on dialysis, [is that] it's a process. It takes time to get the medications balanced out, the diet balanced out, and get a feel for what works for you and your body… Everyone is a little bit different with what works for them and what doesn't.”

References

1. ^{American Kidney Fund. Quick kidney disease facts and stats. July 19, 2024. Accessed August 21, 2024. https://www.kidneyfund.org/all-about-kidneys/quick-kidney-disease-facts-and-stats}
2. ^{Berns, JS. Patient education: Dialysis or kidney transplantation — which is right for me? (Beyond the Basics). UpToDate. July 2024. Accessed August 21, 2024. https://www.uptodate.com/contents/dialysis-or-kidney-transplantation-which-is-right-for-me-beyond-the-basics/print}
3. ^{Schmidt, R. Depression in Adults Receiving Maintenance Dialysis. UpToDate. June 20, 2024. Accessed August 21, 2024. https://www.uptodate.com/contents/depression-in-adults-receiving-maintenance-dialysis.}
4. ^{Mehrotra R, Davidson SN, Farrington K, et al. Managing the symptom burden associated with maintenance dialysis: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney International. doi:https://doi.org/10.1016/j.kint.2023.05.019}
5. ^{Lavoie MR, Patel JA, Camacho M. Nocturnal dialysis improves sleep apnea more than daytime dialysis: a meta-analysis of crossover studies. Sleep Med. 2019;64:37-42. doi:10.1016/j.sleep.2019.06.005}
6. ^{Hsu CY, Lee CT, Lee YJ, et al. Better sleep quality and less daytime symptoms in patients on evening hemodialysis: a questionnaire-based study. Artif Organs. 2008;32(9):711-716. doi:10.1111/j.1525-1594.2008.00593.x}