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PSC in the Australian Context

Primary Sclerosing Cholangitis
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There is a significant and comprehensive lack of information about primary sclerosing cholangitis (PSC) formally available to the general physician working in the Australian health care system at this point in time. 

One of the main sources of evidenced-based medicine and guidelines for the treatment and management of disease in Australia  for medical practitioners is the Therapeutic Guidelines (eTG), an independent, not-for-profit organisation. These Guidelines are written mainly for prescribers with the aim of providing clear, practical and up-to-date information concerning a range of diseases. The  guidelines are based on the latest literature and interpreted by a group of Australian experts in their field. Input is also provided by a network of general practitioners and other relevant parties. In essence, these constitute the most current evidence available to family physicians in Australia. 

A search for primary sclerosing cholangitis within these guidelines provided  a short, two paragraph text with extremely limited information about PSC, very basic information on one medication, and the suggestion that fat-soluble vitamin levels and bone mineral density be checked regularly.  It also noted if there is deterioration in the patient's condition, to check for cholangiocarcinoma. 

The Royal Australian College of General Practitioners (RACGP) and the Australian College of Rural and Remote Medicine (ACRRM) are the Australian educational institutions that define the curricula for education and training of Specialist General Practitioners(GPs)/Family Practitioners. Of note, neither College specifically mentions rare diseases in its curriculum statements. The Royal Children's Hospital (RCH) in Melbourne's clinical practice guidelines, a commonly used resource by Australian clinicians, also does not mention PSC. 

The lack of Australian guidelines presents clinicians and their patients management challenges when diagnosing and treating rare diseases such as PSC, and it is unreasonable to expect GPs to have in-depth knowledge of all these diseases due to their rare status.  An article authored by Knight & Senior, published in the Medical Journal of Australia in 2006, highlighted the lack of a coherent approach to rare diseases in Australia and the impact it has for GPs in providing care for patients. They noted the lack of information generally regarding primary care's role in rare diseases. However, it is clear from the wealth of information readily available online from other countries, in particular the US and the UK, that Australia is lagging significantly behind its international counterparts in the area of rare diseases in general, and PSC specifically.

In both the US and the UK, guidelines for the treatment and management have been developed and are readily available online for perusal by both physicians and consumers. For example, in the US the guideline for the treatment and management of PSC, approved by the American Association for the Study of Liver Diseases, is easily accessible online. These guidelines have a strong evidence base from the most current literature, and "the recommendations suggest the preferred approaches to diagnostic, therapeutic and preventive aspects of care". These recommendations are fully detailed with the weight of evidence provided. The full US guideline is available on the 'files and links' page. Nothing of a similar position stance developed by any Australian medical organisation, private or government, could be located.

Additionally, at this point in time, there is no data on the incidence and prevalence of PSC in Australia, as there are currently no systems in place for surveillance or monitoring of any of the rare diseases which would provide information on their epidemiology and long term impact.  Data concerning incidence, mortality, health outcomes or other data are, at best, recorded in an informal manner.  There is, therefore, no mechanism currently available to develop evidence-based policies,  guidelines and services specifically catering to the Australian context. (Scoping paper, 2013)

Note that the mobile version of this page (PSC) does not show all the subheadings and links. You will need to change to web if viewing on a mobile phone. It is only an issue for this page.

References:
RACGP website
ACRRM website
eTG website
RCH website
Chapman, R, et. al, Diagnosis and Management of Primary Sclerosing Cholangitis, Hepatology, 2010, 51 (2), pp 660-678
Scoping paper on the need for a National Rare Diseases Plan for Australia ,2013, Government of Western Australia, Department of Health, 2013

The information provided in these pages on PSC is intended for informational and educational purposes only, and is not intended to be prescriptive, or to be construed as medical advice in any way . Always consult with your own health care provider/s for specific information regarding your health.

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Page created 31.03.2014
Page Reviewed: 23.09.2015
Disclaimer:  The information presented on this website is intended for information and educational purposes only, and is not intended to be a substitute for medical advice or information in any way. The information is not written by a medical practitioner, and as such it should never be used for diagnostic, treatment or management purposes. If you have questions regarding your medical needs, always seek the advice of your doctor, specialist or other appropriate and qualified health care professional.
This is a non-commercial website, designed and developed to provide relevant information to people living with Primary Sclerosing Cholangitis.
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