The Hidden Workload of Starting Dialysis: Study Maps Treatment Burden in Kidney Patients

For the thousands of people diagnosed each year with advanced kidney disease, the moment they learn their kidneys can no longer cope on their own marks the beginning of one of the most demanding journeys in modern medicine. A new study from the University of Glasgow, published in PLOS One, has followed patients through that journey in unprecedented detail, revealing that the transition onto kidney replacement therapy is not simply a medical event but a sustained period of intense work, decision-making and adaptation that can reshape every corner of a person’s life. The research, led by Catrin Jones and colleagues at a large nephrology and kidney transplant unit in Scotland, offers one of the most granular portraits yet of what researchers call treatment burden, the cumulative effort patients must expend to manage their own care.

Kidney replacement therapy, or KRT, encompasses the treatments that take over the blood-filtering function of failed kidneys, most commonly dialysis performed either at a hospital or at home, and kidney transplantation. Choosing between these options is far from straightforward. Each carries a distinct schedule, a distinct set of risks and a distinct redistribution of responsibility between the patient, their family and the healthcare system. The Glasgow team set out to understand how the workload associated with these choices evolves over time, and how it interacts with each patient’s capacity to absorb it. Treatment burden, as a concept, sits at the intersection of those two forces: the demands placed on a person and the resources they have available to meet them.

The study employed a longitudinal qualitative design, a method that follows the same individuals over time rather than capturing a single snapshot. Thirty participants were recruited from the renal service in Glasgow and interviewed in depth on up to three separate occasions as they moved toward and onto KRT, generating a total of seventy-six interviews. This serial approach allowed the researchers to track how experiences of burden shifted as patients progressed from the first conversations about kidney failure, through education sessions and treatment decisions, to the practical realities of living with dialysis or preparing for a transplant. Rather than treating burden as a fixed quantity, the design exposed it as something that waxes and wanes with circumstances.

Analysis of the interviews was guided by three complementary theoretical frameworks. Normalisation Process Theory examines how people incorporate new health practices into everyday life, asking what it takes for a demanding regimen to become routine. The Theory of Patient Capacity describes the physical, psychological, cognitive and social resources a person can draw upon to do the work of being a patient. Burden of Treatment Theory, developed from decades of research into chronic illness, frames the patient’s workload as an occupational reality that medicine rarely acknowledges. Weaving these frameworks together, the researchers built a picture of burden as the product of an interaction between workload, capacity and the surrounding healthcare system, rather than a property of the patient alone.

Five major themes emerged from the data. The first concerned how patients engaged personal and social resources to navigate the transition, leaning on partners, relatives and friends to attend appointments, absorb information and provide practical help. The second theme captured whether patients felt able to meet the challenges at all, with capacity fluctuating according to symptoms, energy levels, emotional state and financial security. The third theme, preparing to enact the healthcare workload, described the often-overlooked cognitive labour of learning about treatment options, weighing trade-offs and mentally rehearsing what life on dialysis would involve. The fourth theme documented the workload itself once therapy began, and the fifth traced how the whole experience of burden evolved across the timeline of the transition.

The detail within these themes is where the study’s significance lies. Patients described the sheer volume of healthcare contact involved: repeated clinic visits, blood tests, imaging, education sessions and conversations with multiple specialists, each demanding time, travel and attention. Those opting for home dialysis faced an additional layer of responsibility, essentially becoming technicians for their own treatment, managing equipment, supplies and sterile procedures in their own homes. Others described the strain of waiting, particularly for transplantation, where uncertainty about timing compounded the physical demands of remaining dialysis-dependent. The research makes clear that this workload is not evenly distributed; patients with stronger social networks, better financial stability and fewer competing health problems were better positioned to absorb it.

Crucially, the study found that the healthcare system itself was a powerful determinant of how heavy the burden felt. The way services were organised, how information was communicated, how coordinated care was across specialties, and how flexibly appointments and support were offered all shaped patients’ experiences. This finding carries real practical weight, because unlike a patient’s age, comorbidities or family circumstances, the structure of the healthcare system is something clinicians and policy-makers can directly change. The authors argue that particular attention should be paid to this modifiable driver, suggesting that smoother information pathways, better continuity of care and more responsive support could meaningfully lighten the load during one of the most vulnerable periods in a patient’s life.

The longitudinal element of the study also revealed that burden is not static. Many participants described an initial surge of demand around the time of diagnosis and decision-making, when the volume of new information was at its peak and the stakes felt highest. For some, the burden eased as routines settled and treatments became familiar, consistent with the normalisation processes the theoretical frameworks predict. For others, new demands emerged later, whether from complications, changes in treatment modality or the slow erosion of the social and financial resources they had relied upon. This temporal texture, visible only because patients were interviewed repeatedly, challenges the assumption that surviving the first weeks of therapy means the hard part is over.

The implications extend beyond nephrology. Treatment burden has been documented in diabetes, heart failure, cancer survivorship and multimorbidity, but the transition onto kidney replacement therapy represents an unusually concentrated episode of it, combining a life-changing diagnosis, irreversible or semi-irreversible treatment choices and an immediate escalation in healthcare contact. The Glasgow findings suggest that services preparing patients for KRT should assess not only clinical suitability but also capacity: who is available at home, what financial pressures exist, how confident patients feel processing complex information, and what psychological support might be needed. Matching the intensity of preparation and follow-up to each patient’s capacity, rather than applying a uniform pathway, could prevent the burden from overwhelming those least equipped to carry it.

Published in December 2026, the study adds a patient-centred evidence base to a field where decisions about dialysis modality and transplantation have traditionally been framed in clinical terms of survival and complication rates. By documenting, in patients’ own words and over time, the work that kidney replacement therapy demands, Jones and her colleagues have made a case that deserves attention in every renal unit: that the success of a treatment should be measured not only in laboratory values and longevity but in whether the people receiving it can realistically sustain the effort it requires. For patients facing kidney failure, and for the clinicians guiding them, the message is that burden is real, predictable in its contours, and partly within medicine’s power to reduce.

Subject of Research: Treatment burden experienced by patients transitioning onto kidney replacement therapy

Article Title: Exploration of treatment burden during transition onto kidney replacement therapy: A longitudinal qualitative study

Article References: Jones, C., Edgar, B., Stevenson, K., Jani, B., Mark, P., & Gallacher, K. (2026). Exploration of treatment burden during transition onto kidney replacement therapy: A longitudinal qualitative study. PLOS One, 21(10), e0360290. https://doi.org/10.1371/journal.pone.0360290

Image Credits: AI Generated

DOI: 10.1371/journal.pone.0360290

Keywords: kidney disease, kidney replacement therapy, dialysis, kidney transplantation, treatment burden, qualitative research, patient capacity, Normalisation Process Theory, Burden of Treatment Theory, nephrology, healthcare system, longitudinal study