Dr Monique Kilkenny's paper recognised as one of the most read in Medical Journal of Australia

Dr Monique Kilkenny

Congratulations to Dr Monique Kilkenny, whose ground breaking, multi-jurisdictional data linkage research which was published in the Medical Journal of Australia, has been recognised as one of the top downloaded publications in 2018-2019.

Australian-first lupus registry and biobank to provide real world evidence of therapies

Dr Alberta Hoi and Professor Eric Morand

The Australian Lupus Registry and Biobank (ALRB) is essential to improving our understanding of systematic lupus erythematosus (SLE) and could be a world leader, according to experts including Monash University’s Professor Eric Morand.

Published today in the Medical Journal of Australia, the authors said the ALRB will be a valuable resource for clinicians, scientists, industry and government to provide real world evidence of clinical effectiveness of existing or new therapies and management strategies in patients with lupus.

“Lupus is a complex autoimmune disease with diverse symptoms, which place an unacceptable level of burden on affected patients,” said Professor Morand, Head of Rheumatology at Monash Health and Head, School of Clinical Sciences at Monash Health, Monash University.

“Australian data on lupus are scarce, with figures suggesting a prevalence of lupus that ranges from 19 per 100,000 in people of European ancestry to 92 per 100,000 in Indigenous Australians, similar to other chronic diseases such as hepatitis C.”

Professor Morand said that while survival rates have improved in the last fifty years, it is still a sobering thought that lupus, which typically presents in women in their twenties or thirties, confers a 1 in 10 chance of dying before the age of forty.

Despite those numbers, it wasn’t until the ALRB was established in 2012 that fundamental data regarding age, geographic and ethnic distribution; currently used treatments; and unmet needs of patients in Australia was consistently collected.

Ten Australian institutions are now recruiting patients with lupus to the ALRB across Victorian, New South Wales, South Australia and Western Australia, with the common goal of ‘improving treatment and outcomes for people with lupus’.

Economically, the registry also serves a vital purpose.

“In the complex Australian health care system, it is difficult to examine the different components of health care use, so the true economic costs for a disease such as lupus are often grossly underestimated,” said co-author Dr Alberta Hoi, Head of the Monash Lupus Clinic and chief investigator, Lupus and Arthritis Research Group at Monash University.

The ALRB will allow the tracking of health care uses related to the care of lupus in Australia and will provide data for benchmarking.

”With the rising costs of health care and a limited health budget, it is paramount that data are available to study the cost effectiveness of various management strategies,” said Dr Hoi.

“Health care use, based on annual patient self-report of hospitalisations, investigations and other health complications, may form the basis to derive cost.”

Professor Morand said the ALRB information may help measure the health consequences of different health care interventions.

Streamlined approach and treatments improves the quality of care for men with prostate cancer

Professor Mark Frydenberg

The quality of prostate cancer care is improving according to new Monash University research published yesterday in The Medical Journal of Australia.

The five-year collaborative study between Monash University and 33 health institutions across Victoria, capturing 75 per cent of men diagnosed with prostate cancer in Victoria, found that processes of care were markedly improved, suggesting that the feedback from quality indicators was clinically valuable.

“We know that quality indicators are valuable tools to enable benchmarking performance of hospitals and clinicians. Where there is confidence in the quality of the data, providing these indicators back to health services and doctors has been shown to drive quality improvement.

“It’s terrific to see through quality indicators that the outcomes for men with prostate cancer are good and becoming even better,” said Professor Sue Evans, Head of the Clinical Registry Unit at Monash’s School of Public Health and Preventive Medicine, which houses the Movember-funded Australian Prostate Cancer Clinical Registry.

Prostate cancer continues to be the most commonly diagnosed cancer among Australian males. More than 18,000 Australian men are diagnosed with prostate cancer each year.

For men living with prostate cancer, there are a variety of treatment options now available which vary according to the stage of disease at diagnosis, but can include: active surveillance; hormone therapy; surgery; radiotherapy; or a combination of therapies.

“The Prostate Cancer Research International Active Surveillance (PRIAS) protocol guideline suggests men with low risk disease should be under active surveillance rather than receive immediate invasive treatment. Our Victorian research found the proportion of men with low risk disease who underwent active treatment declined over the five year period,” said Associate Professor Evans.

“As a practicing urologist it is satisfying to see such a high percentage of urologists committed measuring outcomes and improving quality of care,” said Professor Mark Frydenberg from the Department of Surgery at Monash University and Monash Health.

Professor Frydenberg said it can highlight areas of improvement such as clinical T stage documentation in histories, ensuring men with low risk cancer are ideally managed with surveillance, and ensuring that specialists can track potency and continence outcomes and measure for improvement with time.

“It is also gratifying to see a reduction in the pT2 margin rates suggesting better patient selection and better surgery to cure the disease.”

The mean percentage of PRIAS non-compliance had increased non-significantly from 45 per cent in 2009 to 55 per cent in 2010 and 50 per cent in 2011, but a downward trend was evident in 2012 (40 per cent) and 2013 (34 per cent); this achieved statistical significance in 2013 (P = 0.024).

The study also found that men diagnosed with high risk or locally advanced prostate cancer received treatment at a quicker rate across the duration of the study.

“This has the real potential to substantially improve quality of care, and also identify gaps in care such as in regional or rural areas that could be explored and inequities addressed,” said Professor Frydenberg.

“I would suggest that patients are also encouraged to ask if their surgeon participates in the registry as a sign of the urologists’ commitment to quality care of men with prostate cancer in Victoria.”