Monthly Archives: March 2016

Filling the knowledge gap on active surveillance

Simon Crompton

Simon Crompton

Active surveillance of men with localised prostate cancer is becoming increasingly popular. It is an observational approach, involving regularly testing, allowing men with low risk prostate cancer the opportunity to avoid or delay aggressive treatments.

Potentially, it’s of huge benefit to thousands of men: a recent study indicated that just 1% of men whose low risk prostate cancer is managed through active surveillance go on to die of the disease.

But, as delegates in Milan at last month’s third ESO Conference on Active Surveillance for Low Risk Prostate Cancer discussed, a big question looms: how do you identify the right men for active surveillance? Clearly, the implications of incorrectly defining “low risk” are major.

The problem is that you have to follow men for a long time to discover whether their prostate cancer will, in the end, prove life-threatening. The likelihood of cancer causing death depends on both the tumour (aggressiveness and extent) and the patient (age and co-morbidities). Without long-term studies characterising the type of disease and person suitable for active surveillance, selection is difficult.

How to define low risk?

In their absence, researchers are trying to find predictors of disease progression to support risk-based selection of patients. Existing prediction models help but, as Ewout Steyerberg from the Centre for Medical Decision Making at Erasmus University pointed out in Milan, much stronger predictors are needed to separate low risk from high risk patients.

The answers are likely to come from large studies analysing existing data from men with prostate cancer – and in particular a major study funded by the Movember Foundation, known as the Global Action Plan 3 project, or GAP3.  Movember has five GAP projects, but GAP3 specifically addresses the question of how you select the right men for active surveillance.

It aims to create a global consensus on selecting and monitoring men with low risk prostate cancer through studying the cases of 10,491 men across 19 institutions worldwide. This is the largest prostate cancer active surveillance database, comprising the majority of the world’s active surveillance patient data.

The significance of GAP3 to preventing overtreatment in prostate cancer cannot be underestimated. Today, one and a half years into the project, all the data from participating centres has been uploaded into a central database. Each patient’s clinical history and biospecimen, imaging and biomarker data is being analysed.

This analysis, due to be complete in August this year, will feed into a simultaneous expert review of all current active surveillance guidelines available around the world, leading to a new consensus guideline setting out which patients are suitable for active surveillance, and what are the most effective ways of monitoring them.

And the end result – available in perhaps 18 months’ time –  will be a web-based platform, based on the guidelines and using risk-based modelling derived from the new analysis, to help clinicians decide which patients are suitable for active surveillance.

Perhaps just as importantly, as Sophie Bruinsma from Erasmus Medical Centre pointed out in Milan, it will also provide some reassurance to men that that they have made the most sensible, risk-based decision about their disease.

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Getting cancer information to those who need it most

lena sharp

Lena Sharp is Head of Cancer Care Improvement, Regional Cancer Centre, Stockholm-Gotland

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Arja Leppänen is a cancer survivor and leader of the Stockholm Regional Cancer Centre’s project in Botkyrka

Associations between levels of education, socioeconomic factors and cancer are well documented. Stockholm is no exception – the data show important disparities across the city in the rates of new cancers, rates of survival and attendance levels at screening.

At Stockholm’s Regional Cancer Centre, we are trying to find the best way to help communities most at risk to take action to protect themselves. We’ve started by focusing on a community with the lowest mean income and educational level in the region – the south Stockholm suburb of Botkyrka, which has a large migrant population, with residents originating from more than 100 countries and speaking 160 different languages.

One part of the project is to recruit and educate volunteers from the community to serve as ‘Peer Advisors’. Their role is to inform their peers about health and how to reduce their risk of developing cancer. We now have 42 peer advisors, women and men, the youngest being only 16 and the oldest 63. They originate from 30 different countries, and each speak at least four languages. Six of our peer advisors have been diagnosed with cancer and the others have family members or friends with cancer.

We will compare participation rates in cancer screening programmes before and after the project, and gather supplementary evidence using  surveys and qualitative interview data. The results from the evaluation will guide our future work on addressing multicultural inequalities in cancer care in the region.

One of the peer advisors is a well-known rapper and song-writer, Dogge Doggelito. He lost his young wife to cancer some years ago, has always lived in Botkyrka, and is a role model for young people in the community. His involvement in the project has been very important and has generated extra attention from media.

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Peer advisor Mary-Louise Gwada perfoming at a “Rap-school” for project team and peer advisors, led by Botkyrka’s own Rap-star Dogge Doggelito (left)

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Dogge with project leader Arja

Before the start of the project, the peer advisors were trained for their new role, learning about the European Code Against Cancer, cancer screening, cancer biology and care, patients’ rights, motivational interviewing, and more.

A key part of this project is to organise public information activities in the community to raise awareness about cancer and cancer prevention. Much of this is done in collaboration with cultural organisations active in the community.

Our experience so far is that this work is bringing us closer to people we usually do not reach with other health campaigns in Swedish. The main challenges we’ve encountered include issues related to language barriers, health literacy, and different cultural and/or religious attitudes about cancer.

In addition to the excellent collaboration between people working at local and regional levels, the involvement of people who are not healthcare professionals as well as patient representative at all levels has been very important for the success of the project. The peer advisors are in a unique position to reach populations who may be unfamiliar with the national healthcare system, and may have a low level of health literacy. The fact that the project manager is a cancer survivor seems to have been an important factor in establishing the legitimacy of the project in the eyes of the local community.

The project has attracted good media coverage such as in the local newspaper Södra Sidan , and features on the local council website  and Facebook page. Further information can be found on the website of the Stockholm-Gotland Regional Cancer Centre

 

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Peer advisors spreading information on what people can do to reduce their cancer risk

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