Australasian lung cancer clinical care registry to benchmark best practice

Lung cancer

By Mardi Chapman

27 Oct 2022

A Trans-Tasman lung cancer clinical quality registry will help identify practice variation and improve the safety, quality and effectiveness of lung cancer care across Australia and New Zealand, respiratory medicine specialists say.

The proposed registry will build on the experience of the Victorian Lung Cancer Registry and has broad multidisciplinary support from clinicians and consumer advocates.

The registry is one of the six recommendations in the recent Lung Foundation Australia report, The Next Breath: Accelerating Lung Cancer Reform in Australia 2022-2025. [link here]

Respiratory physician Associate Professor Rob Stirling told the limbic that the registry would provide “data driven improvement in healthcare, confirmation of access and equity for disadvantaged Australians, real world data supporting research outcomes, a research platform to drive health systems research, and capability for targeted institutional quality improvement.”

Associate Professor Stirling, from Monash University and The Alfred Hospital, said quality indicators in the Victorian registry cover diagnosis, staging and treatment planning, treatment, care after initial treatment and recovery, management of recurrent, residual or metastatic disease, and end of life care.

He said the registry had shown a high level of compliance (97%) with the quality indicator of a documented PET scan before surgery, however low compliance (33%) with the quality indicator of documented screening for supportive care.

“Now, one of the big challenges in Australia is we do not have lung cancer nurse specialists…”

He said the first two quality indicators in the UK were ‘Did you meet a nurse specialist when you were diagnosed? and ‘Was a specialist present when the diagnosis was delivered to you?’.

“We don’t even have a nurse specialist indicator because we don’t have nurses. We know the proportion likely to be seen by a nurse specialist is going to be terribly low. And so that’s a really important need.”

A protocol for the ANZ Lung Cancer Clinical Quality Registry has just been published in BMJ Open. [link here]

The Registry will include all adult patients with a confirmed diagnosis of primary thoracic malignancy (NSCLC, SCLC, mesothelioma or thymoma) who have been diagnosed, assessed and/or treated at participating sites.

“My interest is quality improvement. If you don’t measure it, you can’t say that it’s deficient. If you don’t measure it, you can’t say that you’re providing best practice. If you don’t measure it, you can’t identify opportunities for improvement.”

He said lung cancer had suffered in the past from therapeutic nihilism related to historically poor outcomes. However targeted therapies and immunotherapies were now leading to extraordinary changes in survival profiles.

“But what that also means is if you want to measure evidence based practice in the setting of a very rapid evolution of best practice, you’ve got to have the measurement tools in place to show yes, we’re now using immunotherapy in the appropriate population; yes, we’re using targeted therapies; and yes, we’re changing our radiotherapy practices commensurate with the new research evidence.”

Associate Professor Stirling said improvements in the quality of care would flow quickly.

“We’d like to have the data collected within three months and then be able to report it back in what we would call real time… within the same calendar year because the recency of data is critically important to the utility of data.”

By benchmarking against the Victorian data, meaningful measures of quality care at participating centres could be demonstrated.

“It actually identifies practice gaps so …we don’t have access to a PET scan, or we don’t have access to linear EBUS or bronchoscopy, we don’t get a surgeon or we don’t have a multidisciplinary meeting. So we can identify these things very clearly and easily.”

“Any centre can potentially benefit from the development of risk-adjusted benchmarking reporting of their activities… [and] this can be utilised in any single institution. You don’t need to wait for the whole state or the whole country to be online.”

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