Patient-Centered Outcomes in Kidney Disease Management

Patient-centered outcomes in kidney disease management encompass measures that reflect patients’ lived experience, priorities and well-being rather than solely biochemical or anatomical endpoints. Quality of life, symptom burden, treatment satisfaction and financial impact are increasingly recognised as vital metrics alongside traditional measures such as glomerular filtration rate or hospitalisation rates. Patient engagement in defining outcomes has driven the adoption of core outcome sets to ensure consistency and relevance across clinical trials. Multidisciplinary and integrated care models seek to align interventions with patients’ goals, supporting self-management, shared decision-making and psychosocial support. Global variations in access to renal replacement therapy, equity of care for rural and socioeconomically disadvantaged populations, and heterogeneity in outcome reporting remain major challenges. Recent efforts have focused on standardising outcome measurement, improving trial design and broadening the scope of assessments to include mental health, financial hardship and daily functioning. Advances in telehealth and community-based services offer new avenues for delivering person-centred care, while emerging research highlights the need for adaptable outcome frameworks that can be applied across diverse healthcare settings and patient populations.

Research from Nature Portfolio

Recent studies have characterised the global epidemiology of haemodialysis outcomes, revealing substantial disparities in availability, cost and patient experience across regions. Despite technological advancements, individuals receiving haemodialysis continue to face high symptom loads and impaired quality of life, with cardiovascular disease accounting for the majority of morbidity and mortality. Analysis of international data underscores the influence of socioeconomic and healthcare system factors on treatment accessibility, affordability and survival. Wide variations in the monitoring and reporting of patient-relevant outcomes have been identified, impeding efforts to benchmark care and implement best practices. These findings have prompted calls for harmonised outcome definitions and more inclusive registries that capture patient-reported measures, paving the way for targeted interventions to reduce inequities and improve the lived experience of people on dialysis.

Patient-Centered Outcomes in Kidney Disease Management publication trend

The graph below shows the total number of articles in patient-centered outcomes in kidney disease management across all publications each year (not limited to Nature Index journals).

Technical terms

Patient-centered outcomes: Measures that reflect patients’ priorities, including quality of life, symptom burden and financial impact.

Estimated glomerular filtration rate (eGFR): A calculated index of kidney function based on serum creatinine, age and other factors.

Haemodialysis: A renal replacement therapy that filters waste and excess fluid from blood via an external dialyser.

Core outcome set: An agreed minimum collection of outcomes to be measured and reported in all trials for a specific condition.

Multidisciplinary care model: A collaborative approach in which professionals from various disciplines coordinate to address the complex needs of patients.

References

1. Epidemiology of haemodialysis outcomes. Nature Reviews Nephrology (2022).
2. The effectiveness of multidisciplinary care models for patients with chronic kidney disease: a systematic review and meta-analysis. International Urology and Nephrology (2017).
3. Standardised outcomes in nephrology – Haemodialysis (SONG-HD): study protocol for establishing a core outcome set in haemodialysis. Trials (2015).
4. Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy. Trials (2021).
5. Clinicians’ perspectives on equity of access to dialysis and kidney transplantation for rural people in Australia: a semistructured interview study. BMJ Open (2022).