Award Winning Research Evaluates the Psychological Impact of Living with Inherited Polycystic Kidneys

In the first European study of its kind, researchers have identified an increased psychosocial risk, depression and reduced quality of life in patients with inherited polycystic kidneys as the condition progresses.

Researchers from the Academic Unit of Nephrology, Department of Infection, Immunity & Cardiovascular Disease, created a postal questionnaire to comprehensively evaluate the psychological burden of living with autosomal dominant polycystic kidney disease (ADPKD), the commonest genetic kidney disease.

The physical consequences of ADPKD are well recognised. The condition causes early onset hypertension, urinary tract infections, haematuria and with progressive growth and development of cysts, kidney enlargement and failure, typically in 50% of affected individuals aged 50-60 years.  Cystic liver disease and intracranial aneurysms are also complications however the adverse psychological consequences are infrequently reported.  However awareness of the inheritance pattern, which leads to a 1 in 2 risk of offspring inheriting the causal gene from an affected parent, potentially facilitates understanding of the psychological burden of this condition on individuals and families.

Patients attending Sheffield Kidney Institute with ADPKD and a range of stages of chronic kidney disease, however not yet requiring renal replacement therapy (dialysis or transplantation) were invited to participate in the study. Notably, 37% of participants had lost a close relative (parent, sibling or child) to the condition.  62% reported feeling guilty they may pass the condition onto their children, 74% perceived they had more problems in their daily life as a consequence of their polycystic kidneys.

Dr Roslyn Simms, National Institute for Health Research Clinical Lecturer in Nephrology at the University of Sheffield, conducted this study under the mentorship of Professor Albert Ong, Professor of Renal Medicine and Head of the Academic Unit of Nephrology.

Dr Simms was recently awarded 2 prizes for presenting this research at the annual Kidney Research UK Fellows Day in September 2015 in York. Dr Simms was honoured to receive both the Best Poster Presentation prize and the Trevor Cook Award (for best communicated research from the patient audience perspective).

This study is the first step in improving understanding of the psychological impact of ADPKD in patients and we plan to conduct a larger study within the UK, ultimately aiming to establish sufficient support services for patients and their families.

Ref: Simms RJ, Thong KM, Dworschak GC, Ong AC (2015) Increased psychosocial risk, depression and reduced quality of life living with autosomal dominant polycystic kidney disease. Nephrol Dial Transplant. 2015 Aug 12. pii: gfv299.  doi: 10.1093/ndt/gfv299