Lives unaffected by cystic fibrosis

Quality Improvement

Cystic Fibrosis Australia (CFA) is committed to improving clinical practice and patient outcomes through our clinical improvement programmes and research. 

We are committed to the goal of extending life expectancy from 37 to 50 years by 2025. To achieve this we maintain our quest for funding to ensure our clinical improvement assets such continue to thrive.

These include the Australian Cystic Fibrosis Data Registry (ACFDR), Peer Reviews, Standards of Care, Infection Control Guidelines, Transition Guidelines and Centre Directors Forums.

Everyone at CFA is focused on fulfilling our mission to deliver clinical improvement and research as the peak national body, supporting state and territory members with their goals to enhance the quality of life of people with cystic fibrosis.

If you would like to support CFA’s Clinical Improvement initiatives such as the Data Registry, Peer Reviews and Infection Control Guidelines please donate here>


Standards of Care


Cystic Fibrosis Australia released the first Australian Standards of Cystic Fibrosis Care Guidelines in 2008 addressing needs unique to Australia. This spectrum of concerns includes Facilities and Staffing, Services, Newly Diagnosed Children, Newly Diagnosed Adolescents and Adults, Outpatient Care, Inpatient Care, Home Therapy, Transition Care, Outreach Services and Care, Transplantation and End of Life Care and the Role of the CF Organisations.

The Guidelines are currently under review and the new guidelines are expected to be complete before the end of the year. There will be additional chapters as well as a review of all existing content.

Resources

Infection Control Guidelines

Infection Control Guidelines for People with Cystic Fibrosis and Carers.

Download the Guidelines (PDF)

Infection Control Policy

In September 2015, the Infection Control Policy was reviewed. The following as a guide for all CF events.

Download the Guidelines (PDF)

Nutrition Guidelines for Cystic Fibrosis

The Nutrition Guidelines for Cystic Fibrosis in Australia and New Zealand were developed and written by dietitians experienced in the field of this disease.

Download the Guidelines (PDF)

Standards of Care

Cystic Fibrosis Australia released of the first Standards of Cystic Fibrosis Care Guidelines to be published in Australia in 2008. The Steering Committee worked together to complete the document and deliver to the Cystic Fibrosis community guidelines relevant to our unique needs in Australia. The specific areas covered are; Facilities and Staffing, Services, Newly Diagnosed Children, Newly Diagnosed Adolescents and Adults, Outpatient Care, Inpatient Care, Home Therapy, Transition Care, Outreach Services and Care, Transplantation and End of Life Care and the Role of the CF Organisations.

Download the Standards of Care (PDF)

Additional Guidelines Currently In Progress

ANTIMICROBIAL RESISTANCE IN CYSTIC FIBROSIS

International Task force

The prevalence of antimicrobial resistance (AMR) among microbial pathogens is increasing and is a high priority worldwide for interventions from antibiotic stewardship to new antibiotic development (http://www.who.int/antimicrobial-resistance/en/).  Increasing AMR prevalence is driven by the widespread use of antibiotics.

AMR is commonly encountered in bacteria and fungi isolated from the airways of people with cystic fibrosis (CF).  This is an expected finding given the high use of antibiotics in CF patients. The increasing survival of people with CF will result in greater lifetime exposure to antibiotics.

There is a lack of full understanding for stakeholders including people with CF, clinicians, the pharmaceutical industry, and (drug approving) regulatory bodies, about the relevance of AMR and how this should influence drug development and usage in the treatment of CF lung disease.

The Taskforce will develop guidelines on the interpretation of AMR for clinical care in CF. The Taskforce will also provide guidance on the role of AMR in clinical trials with new antimicrobial agents. The Taskforce that will have international and multidisciplinary representation will address the following objectives:

  • Understand how chronic infections differ from acute infections with respect to the microbiological assumptions regarding AMR.
  • Describe current and developing methodologies for determining antimicrobial resistance.
  • Assess the value of current susceptibility testing including the frequency and timing of testing.
  • Offer guidance for the use of antimicrobial resistance testing in the conduct of clinical trials by the pharmaceutical industry and regulatory agencies.
  • Set key research priorities for the development of appropriate future application of AMR diagnostics to improve patient outcomes.
  • Explore how monitoring antibiotic usage impacts on AMR in people with CF.

Australia/New Zealand Representatives

  • Cass Byrnes, CF pediatrician
  • Jason Roberts, pharmacist
  • Tim Kidd, microbiologist
  • Scott Bell, adult CF physician

Update from Scott Bell, February 2018

Thanks again to CFA for their support of this international working group. The working group met at the North American CF Conference and had approximately 50 to 60 participants.

Five groups have been established:

  1. Antimicrobial resistance definitions 
  2. Literature review and development of current evidence 
  3. Antimicrobial stewardship 
  4. Education for clinicians, patients, families and participants 

Since that meeting, the Steering Committee Group have had a teleconference to report the update. All four groups are demonstrating rapid progression. The aim is to meet again in Artimino in September 2018 in order to finalise the recommendations of the working group for antimicrobial resistance in cystic fibrosis.

Findings of the groups are anticipated to be presented in a symposium of the North American CF Conference in Denver in October 2018 and again in the European CF Conference in Liverpool in June 2019. 

At least three publications are likely to be generated by the working group but importantly will provide the clinician, research and patient community with an update on AMR in cystic fibrosis.