Conclusions of the MAC Roundtable
“Key Determinants of Inequalities in Cancer Survival across Europe”
(EP, 05 12. 2013)
Population-based cancer survival research helps to identify inequalities in the outcome for each type of cancer by age, sex, socio-economic status (etc.). It enables international comparison of the overall effectiveness of health systems for cancer, and it contributes to assessment of national cancer control plans (24 out of 28 Member States have a national cancer plan). This type of research also suggests future cancer control strategies across Europe.
The entire EUROCARE database contains about 22 million records of patients diagnosed from 1978 to 2007 provided by 117 Cancer Registries in 29 European countries.
Latest results from EUROCARE-5
• The number of adults surviving for at least 5 years after diagnosis has risen steadily over time in all European regions from 1999 to 2007 BUT cancer survival still varies widely between European countries
• Countries with lowest survival for most cancers (Bulgaria, Estonia, Latvia, Lithuania, Poland, and Slovakia) are in Eastern Europe. Here survival is below the European mean, particularly for good prognosis cancers like colon, rectum, lymphomas, and skin melanoma.
• Nordic countries (with the exception of Denmark), central European countries such as Austria, Belgium, France, Germany, Switzerland, and Netherlands, and some countries in southern Europe (Italy, Portugal, and Spain), have the best survival for most cancers.
• Childhood cancer remains a public health issue. Survival at 5 years from diagnosis for children (0-14 years) for all cancers combined is generally good, with 79% now surviving (2005–2007), up from 76% in 1999–2001. However, no progress has been achieved for paediatric malignancies with the poorest prognosis.
• Even though we registered a promising increase in childhood cancer survival in Eastern Europe, there are still unacceptable disparities in survival of children and adolescents with cancer across the continent: survival in Eastern Europe is generally 10 to 20% lower than in Western Europe. Those disparities become larger for paediatric cancers with poor outcomes.
As a conclusion, the roundtable participants ask Member States to ensure that public health research, specifically conducted on the basis of population-based disease registries, shall not be impeded by the new proposal on the General Data Protection Regulation. Public health research shall be granted with an exemption from consent for the patient registries, in order to permit the collection of complete, accurate and high quality data, which is needed to develop effective evidence-based policy decisions and to measure effectiveness of the latest. Therefore, we ask Member States to consider the following main points in future cancer health policy decisions:
• International studies on population-based cancer survival are vital to disclose inequalities across EU countries and are based exclusively on data from population cancer registries. In order to continue to provide high quality data, they need legislative and financial support, as well as recognition of their work by medical societies, patient organizations and policy makers. Mechanisms for such support need to have full endorsement at EU level and their importance to be stressed in the relevant EU documents - communications, programs, such as, for instance, Horizon 2020)
• Ad hoc-studies are necessary to investigate the reasons of such inequalities (e.g. access to early diagnosis and optimal treatments, organization of health care delivery)
• New studies are necessary to better address emerging issues related to the management of elderly patients and of survivorship including quality of life
• To reduce the childhood cancer survival gap in Europe, twinning programmes should be promoted i.e. pairing medical institutions in high-income countries with those in low/middle-income countries
• To ensure good clinical cancer care is important to follow evidence-based clinical guidelines covering the whole patient pathway: early detection, diagnosis, treatment, monitoring and palliative care. Preventive strategies are also vital phases of cancer care.
• To address low survival, there is need for organizing cancer services to ensure that all patients received high quality cancer care
strengthening the governance of cancer care and monitoring and benchmarking performance through better data
Cancer registry based project on survival and care of cancer patients in Europe.
EUROCARE-5 will continue the activity of surveillance and the comparison between survival and care of cancer patients across Europe, initiated with EUROCARE-1,-2,-3 and -4 during the early 1990s.
1. To update the existing EUROCARE data bank, by including data of patients diagnosed up to 2007. Follow up will be updated to the most recent possible dates (e.g. on 31/12/2008) in order to analyse both long and short term survival rates of cases diagnosed more recently.
2. To analyse survival of cancer patients by means of conventional and more innovative methods: e.g. cohort relative survival; period survival analysis to estimate survival of patients with recent diagnosis; mixture survival model to estimate the proportion of patients cured.
3. To compare diagnostic and therapeutic procedures for cancer patients in Italy with those in other European countries at high survival by means of high resolution studies (HR).
4. To increase and promote the use of cancer survival registry data. The EUROCARE results will be diffused among the medical, public health and scientific communities, to the public in general, to tumour patients and to health planners.
From survival analyses
- period survival analyses will be used to provide an estimate of survival time for patients diagnosed in recent years.
- the cohort method will be used for producing relative survival estimated by tumour site, age, country and gender. As in the past EUROCARE projects, relative survival will be computed by using the specific population life tables of the cancer registries.
- The proportion of cured patients estimated by mixture survival models will produce a complementary indicator to overall survival.
- Time trends of survival will provide information to the discussions on the effects of screening programmes and on the effectiveness of new treatments.
- Comparison of cancer survival between Europe and USA will be made available. Until now survival of the EUROCARE patients has been compared with that of patients included in the SEER (Surveillance, Epidemiology and End Results) network. This comparison will now be extended to the US registries of the NCP (National Cancer Registry).
From the High Resolution studies
Comparisons of the breakdown by tumour stage at diagnosis across regions, taking into account the type of diagnostic investigation.
Development of Indicators of best practice and comparisons of their frequency across European regions. Examples of these indicators: hormonal treatment for breast cancer patients with ER positive; treatment with trastuzumab for breast cancer with HER2 over-expression; adjuvant chemotherapy in Dukes C colon cancer; frequency of sentinel lymph node examination. Multivariable analyses will be carried out for comparing across regions the odd of receiving a given treatment, by age, stage and other prognostic variables.
Increase of the quality and availability of morphology data. A part of cancer survival differences could be explained by a difference in criteria that have been adopted to establish the tumour invasiveness. The feasibility to carry out studies which also review the microscopic slides on a sample basis is going to be explored.
From both survival and HR studies
Traditional publications such as scientific articles in biomedical journals or dedicated monographs and books.
Electronic publications and Links with related cancer websites.
Participation in national and international scientific meetings.
Contacts with regional and national health planners and authorities.
Communication with patient’s organisations and charities.
Organization of seminars and courses.
LONG TERM EXPECTED OUTCOMES FROM THE WHOLE EUROCARE PROJECT
Reduce inequalities in cancer care and survival across Europe.
Increase standards of cancer care in Europe.
Provide information that is useful for health planners, doctors and citizens as well.