Issue 23 / 18 June 2012

INFORMATION from clinical trials informs our treatment of breast cancer, as it does that of many other common diseases.

The trials establish “ideal” management, but the relevance of this information to any individual patient varies because the strict inclusion criteria used for trials exclude many important groups in the community. In breast cancer trials, the old, the poor and the rural-dwelling are often underrepresented.

So, the art and challenge of modern medicine centres largely on translating idealised trial data into the best care for our patients.

In the latest issue of MJA, researchers describe the incidence of metastatic breast cancer in Australian women with an initial diagnosis of non-metastatic disease. This is the first population-based Australian report on this subject, and it provides “real world” data that complement trial statistics, and that will inform discussions with Australian women newly diagnosed with breast cancer, for whom the issue of possible cancer spread is personal and vital.

The article is important for its headline findings, its methods and its implications for clinical care and the collection of meaningful data. The incidence of metastatic breast cancer, within 5 years of diagnosis, was found to be about 5% for women with localised disease and 18% for women with regional disease at initial diagnosis, with most metastases occurring in the second year.

The study could not assess the effect of tumour biology, but it is clear that nodal involvement remains a major determinant of outcome.

That outcomes were worse for younger patients and women from areas of lower socioeconomic status indicates that resources need to be directed towards these (now) proven areas of need.

The study used data from the NSW Central Cancer Registry, and through the Centre for Health Record Linkage was able to link this information with data from the NSW Admitted Patients Data Collection to determine the incidence of metastatic disease.

That some patients with metastases may not have been admitted to hospital or have had biopsies (and thus were not recorded in the hospital data or reported to the cancer registry) means that the study may have missed some women.

Clearly, health record linkage is a powerful tool, and it promises much for the elucidation of data that are representative of (and applicable to) the general population.

However, that the study was limited by only having information available from hospital and cancer registry sources indicates that there is an important need for accurate and reliable population-level registry data about cancer biology and other possible prognostic factors about cancer treatments, and about cancer recurrence, not just its incidence.

In NSW, an additional register called the Clinical Cancer Registry has been established to collect such information. These data will also allow the detection of changing trends in outcomes after the diagnosis of local and regional breast cancer in a more timely fashion than mortality data, given that most women diagnosed with breast cancer can be expected to live for many years.

Further, where reductions in deaths are observed, we would be better placed to determine whether this is attributable to a decrease in distant spread or to increases in the duration of postmetastatic survival as a result of improved treatment of metastatic disease.

While the development of a clinical cancer registry is an excellent initiative, unfortunately, at this stage, the data collection is limited to public-sector facilities.

It is important that issues surrounding the collection of accurate and comprehensive data and the linkage between registers are well thought out.

The legislative hurdles associated with the information sharing that would enable the development of a national clinical register are daunting.

However, fragmentation of information is undesirable, and the potential for the e-health record to contribute to the automated collection of high-quality information is clear, and should be a priority.

Dr Annette Katelaris is the editor of the MJA.

This article is reproduced from the MJA with permission.

Posted 18 June 2012

2 thoughts on “Annette Katelaris: Let’s improve data collection

  1. barrister says:

    Beware of doctors who want to centralise personal data in government computers – the MJA should be ashamed to put forward such an idea – the greatest malignancy is the siren call for e-health to help researchers. The metastatic effect of such socially malignant proposals is patently lost in the tunnel vision of spurious utility. Clinical cancer reigisters are sufficient to obtain meaningful trends in diseases. There is truth in the adage – the road to hell is paved with good intentions.

  2. Frank Vajda says:

    I applaud your comments, being aware of the limitations of trial data as regards the inclusiveness of all patients identified as suffering from the disease.
    If a total register of diagnosed important diseases were established it would enable researchers to relate any specific subpopulation to this database, which would enhance its validity and acceptabilty.
    In other areas, beside cancer, the Scandinavian and the Dutch appear to utiliise comprehensive, population-based databases, which makes their publications more authoritative. This applies to epilepsy as well as psychiatric disorders in prematurity, to quote recent examples.

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