Empowering Young Adults: Reimagining Peritoneal Dialysis Support

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The landscape of kidney replacement therapy continues to evolve, with increasing recognition that peritoneal dialysis (PD) offers important benefits including greater autonomy, quality of life, and preservation of residual kidney function compared to in-center hemodialysis.¹ The Advancing American Kidney Health initiative in the United States has set ambitious goals for expanding home dialysis utilization, making it critical that we understand the experience and impact of the modality across different patient populations.²

Young adults undergoing kidney replacement therapy represent a distinct demographic. They are neither children, who are largely cared for by family, nor older adults, who may have more stable lifestyles. Instead, they face dynamic life changes that require a balance of medical, social, and psychological support.³ In spite of this, the unique challenges and considerations for young adults in particular often remain underexplored. Young adults with kidney failure can face a dizzying array of transitions: moving from pediatric to adult care, from life without dialysis to life with dialysis, between support networks, and through critical life phases, such as starting work, forming relationships, or pursuing education. In this context, Lyons et al⁴ provide timely insights into the unique challenges and needs of young adults receiving PD.

This mixed-methods study examined factors influencing transitions from PD to hemodialysis among young adults. The quantitative analysis included 470 participants aged 0-30 years who underwent dialysis between 1987 and 2015, while qualitative interviews were conducted with 13 young adults (ages 14-29) who underwent PD between 2013 and 2015. The study found that young adults and older adolescents (ages 15-30) had significantly higher rates of transitioning to hemodialysis than those aged 0-14, with hazard ratios ranging from 2.41 to 3.39 (P < 0.005). The main causes for transitions were infection (50%), adherence issues (21%), and mechanical complications (18%). PD technique survival rates were 71% at 1 year and 37% at 5 years. Older age within the cohort and systemic diseases were significantly associated with an increased risk of PD-to-hemodialysis transition.

The qualitative analysis revealed key themes regarding communicating treatment options, impact on daily life, support structures, and resilience. The findings highlight the critical importance of comprehensive education and expectation management before and during PD. Many young adults felt inadequately informed about treatment options and perceived bias favoring PD in pre-dialysis education. Additionally, many young adults reported a lack of preparation for the physical and psychological impacts of therapy, such as the discomfort of exchanges and body image changes. They struggled with the daily nature of PD and its effects on social life, relationships, and identity formation during this pivotal life stage. Furthermore, they faced challenges with living situations that increased infection risk.

The findings highlight critical opportunities to enhance support for young adults on PD through targeted interventions and systemic changes (Table 1). Comprehensive pre-dialysis education needs to be personalized and tailored to include realistic discussions about daily impacts, potential complications, and long-term health considerations.⁵ Medical teams should acknowledge that starting PD represents a profound life transition, not merely a medical intervention. Physicians and health care staff often view PD as a better alternative to in-center hemodialysis, but for many patients, the alternative they have experienced is that of no dialysis. A patient-centered approach needs to center the perspective of the patient. This requires developing age-appropriate educational materials that address both immediate concerns and long-term health preservation strategies, such as infection prevention protocols tailored to young adult lifestyles, as well as guidance for exercise and overall wellness. Health care providers should also set clear, achievable expectations while emphasizing flexibility in adapting care routines to individual circumstances. This might include discussing how to modify PD schedules around work or school, strategies for maintaining social connections while managing treatment demands, and practical approaches to common challenges such as travel or living situation changes. Separately, providers should maximally try to maintain peritoneal membrane function and preserve residual kidney function to optimize PD therapy.

Table 1.

Potential Concerns and Solutions Around PD for Young Adults

Timing	Potential Concerns for Young Adults	Potential Solutions
Pre-PD, while considering treatment options	-Limited understanding of treatment options. -Perceived bias favoring PD during pre-dialysis education. -Inadequate preparation for the physical, psychological, and lifestyle impacts of PD. -Concerns about body image, daily regimen, and compatibility with education, work, and relationships. -Need for realistic discussions about complications and long-term health considerations.	-Personalized, age-appropriate pre-dialysis education. -Realistic discussions about daily impacts, potential complications, and long-term expectations. -Shared decision making to align treatment with individual goals and lifestyles.
While on PD maintenance	-Challenges in managing daily exchanges and maintaining treatment adherence. -Risk of infection due to living situations and lifestyle changes. -Impact on social life, relationships, and identity formation. -Feelings of isolation; need for peer support and community. -Desire for flexibility. -Balancing autonomy with medical guidance.	-Flexible treatment options, such as incremental PD or combined therapy approaches. -Peer support programs tailored to young adults. -Community-based dialysis settings. -Resources for infection prevention and lifestyle adjustments. -Open communication to support autonomy and shared decision making.

Abbreviation: PD, peritoneal dialysis.

Peer support is a valuable resource for patients receiving dialysis, and it may have a particular role for young adults. Young adulthood is when people form lasting relationships and develop their sense of self; feelings of isolation can therefore have profound and lasting effects on one’s mental health.³ Peer groups have been beneficial for a number of different disease states; they are associated with self-efficacy, which in turn promotes greater engagement in one’s care, leading to better outcomes in both disease management as well as nonmedical aspects of life.6, 7, 8 Patients with chronic kidney disease in particular experience a number of transitions, from learning about their disease, to starting dialysis, hopefully to transplantation, and then sometimes back to dialysis. For young adults, these compound the challenges of an already dynamic time of life. Fellow patients can provide firsthand insights into navigating these decisions and transitions, giving practical advice and empathy beyond what even the most well-meaning health care team can offer. Successful peer support programs rely on personalized matching of pairs and groups, clinician promotion and engagement, and iterative improvement.⁹ For patients receiving maintenance dialysis, peer support may particularly help with self-efficacy, adherence to dialysis, medical and practical dialysis knowledge, and feeling supported.⁹

Self-managed dialysis in a communal setting has also been proposed as a way to balance patients’ need for community and their need for independence. In Australia and New Zealand, some patients use a community hemodialysis house, wherein a local organization and the health care system together provide supplies and maintain the hemodialysis machines, but patients perform their own dialysis.¹⁰ In these settings, patients found community support and also felt relieved from the constraints of doing dialysis at home.¹¹ As noted, young adults would particularly benefit from peer support, and for those struggling to manage home dialysis in a dormitory or while living with roommates, such a community house may be an ideal dialysis setting. Existing community dialysis houses have almost exclusively been used for hemodialysis, but one could envision a shared space for PD patients to train together, gather for manual exchanges or daytime exchanges, store supplies, and offer mutual support.

For those with residual kidney function, incremental PD may be particularly beneficial. Incremental PD may take the form of fewer PD exchanges a day or allowing patients to take 1 or 2 days “off” a week.¹² In the present study, one participant noted wanting a break from the daily nature of the PD schedule, and “onerous treatment regimen” was a recurring theme. As young adults try to juggle medical therapy with other major life changes, greater flexibility and accommodation from incremental PD may provide some relief. Shared decision making should be used to best tailor the therapy to the individual; incremental PD, allowing patients to take 1 or 2 days off a week, may better suit schedules than low-dose dialysis every day. Of course, providers should carefully manage patients’ expectations and note that they will eventually need “full-dose” PD as they gradually lose residual kidney function. In addition to incremental PD, other flexible treatment plans can include combining automated cycler therapy with manual exchanges or incorporating occasional in-center dialysis sessions to provide respite care.

In summary, young adult patients have unique needs that should be recognized. For many of them, their disease began when they were pediatric patients, but transplant listing after age 18, as an adult, means a much longer waitlist and therefore often a prolonged need for dialysis. Patients in young adulthood are juggling multiple transitions in their surroundings, peer group, and in work and school; a major medical need such as dialysis throws in an additional element of great uncertainty. Some patients will benefit from flexibility and feel confident in their decision making, whereas some will need structure and guidance. Nevertheless, even those who benefit from structure may feel reassured to know that they have options. Providers also have to be willing to cede some control over the process and acknowledge and recognize patients’ autonomy and independence. Ultimately, until a portal dialysis device is widely available, providers must partner with patients to optimally manage home dialysis, offering them flexible options and sometimes creative solutions.