Multi-disciplinary Renal Genetics Clinic improves patient diagnosis

The multidisciplinary Renal Genetics Clinic (RGC) based at Royal Brisbane and Women’s Hospital (RBWH) is leading the way in improving the diagnosis and care of patients with inherited kidney disease.

Led by Dr Andrew Mallett and Dr Chirag Patel, the RGC was the first comprehensive renal genetics clinical service in Australasia, having opened in August 2013.

The clinical service provides multidisciplinary and subspecialty care in diagnostics and management for Queensland patients with often rare and genetic forms of kidney disease.

Kidney-related disease affects around one in 10 Australian adults.

“Ten to 20 per cent of these people will have an inheritable form of kidney disease,” Dr Mallett said. “And with more than one million hospital admissions in Australia each year from kidney disease, our work will play a key part in improving patient outcomes.”

The RGC team undertook a retrospective cohort study of 108 patients from 100 families who attended the clinic during its first two years of operation.

Dr Mallett said patients underwent clinical appraisal and a tailored combination of differential diagnosis discussion, disease information provision and genetic counselling.

Genetic testing was often, but not always, used, with results confirming or clarifying a diagnosis for about half of the patients. In a quarter of patients, the diagnosis was changed.

“This study of our clinic has given us a greater understanding of its positive impact as well as of how it has helped inform patients about inheritability, implications of different treatments for their condition, and enabling informed and patient-led discussions on family planning or renal transplantation.”

“In our first two years we have clearly demonstrated positive short term outcomes for patients and their ability to access mainstreamed genetic services.

“Our patient-focused model shows genetics and genomics can be effectively introduced into everyday clinical practice.”

“The RGC is a true statewide service which has resulted from a deep collaboration between Genetic Health Queensland and the RBWH Kidney Health Service. It continues to expand in response to clinical demand, including the commencement of telehealth and paediatric services in late 2015 to complement the existing adult service.”

The RCG’s success has paved the way for similar models at Melbourne’s Royal Children’s Hospital and soon at Sydney Children’s Hospital Network.

The RGC team is part of a larger research team which has recently attracted significant grants from the RBWH Foundation and the National Health and Medical Research Council.

A multidisciplinary renal genetics clinic improves patient diagnosis, by Andrew Mallett, Lindsay F. Fowles, Julie McGaughran, Helen Healy and Chirag Patel on the first two years of the RBWH RCG, has been published in the Medical Journal of Australia’s February edition.