A landmark national survey capturing the experiences of people living with end stage kidney disease in Ireland has been launched by researchers from RCSI.

The study was led by Dr Lisa Mellon and Professor Frank Doyle from the RCSI School of Population Health, with contributions from a multidisciplinary panel of researchers and healthcare professionals.

The survey, the first of its kind in Ireland, was funded and published by the Irish Kidney Association in collaboration with the HSE’s National Renal Office. Over 1,000 people living with kidney failure, including those on dialysis and transplant recipients, contributed through a specially designed patient-reported experience survey.

Findings show high levels of satisfaction with renal care services, with 80% of dialysis patients and 79% of transplant recipients reporting that their treatment is 'the best it can be'. Patients praised the cleanliness of dialysis units, the kindness and professionalism of healthcare teams, and the support they received throughout their treatment.

However, the report also highlights areas where improvements are needed, including access to renal dieticians and psychological support, improved financial support for home dialysis patients, improved food options in dialysis units, and enhanced communication between healthcare providers. Many patients expressed concerns about the lack of privacy during dialysis treatment and the need for better electronic health record systems to support continuity of care.

High-quality care

Dr Lisa Mellon said: “The insights from this survey will help guide the ongoing development of renal services in Ireland. As demand for dialysis and transplant care continues to rise, understanding the lived experiences of patients is critical to delivering high-quality, person-centred care.”

Carol Moore, CEO of the Irish Kidney Association, said: “This report puts the voice of the patient at the centre of kidney care in Ireland. It will serve as a valuable resource for healthcare professionals, policy makers and patient advocates. We’re grateful to the patients who shared their experiences and to our partners in RCSI and the National Renal Office who helped bring this project to life.”

Addressing needs of patients

Professor George Mellotte, National Clinical Lead for Renal Services, HSE, said: “It is important for healthcare professionals to fully understand the needs of their patients and the NRO welcomes this in-depth survey of the kidney disease patient experience in the Irish healthcare system.

“It has highlighted the excellent work done by HSE staff and brought attention to the areas that require improvement. This survey will help guide the HSE and the NRO into addressing the needs of our patients.”

The full report, 'Living with End Stage Kidney Disease in Ireland: Patient Satisfaction with ESKD Services in Ireland', is available to read here.