Cancer Survivorship: Europe—Inequalities and Actions
Francesco de Lorenzo, MD
In the European Union (EU), the burden of cancer has become so prominent in terms of social and economic implications that it is now considered to be a significant element of European societies. In the EU, life expectancy at birth has increased over the last several decades. However, disparities within the EU have also increased, and recent figures indicate that although in some countries (mainly eastern European countries) life expectancy is approximately 70 years of age, in other EU countries it is reaching or surpassing 80 years. A similar pattern has emerged with respect to cancer survival rates. Indeed, there has been a dramatic improvement in 5-year survival for individuals diagnosed with cancer. The survival rate (for all cancers combined) 5 years after a cancer diagnosis is now approximately 50%, but there are still notable differences within regions or even countries; the 5-year cancer survival rate ranges from approximately 40% to nearly 60% across European countries.
Disparities are evident in all epidemiological data: cancer prevalence rates (ie, all individuals who have had a previous cancer history) are estimated to range from 1 to 5 per 100 in the various EU populations, and from 10 to 15 per 100 in the elderly segment (those aged older than 60 years). These differences result in large variations in terms of patient needs, with the social and economic impact of cancer varying considerably across European countries. However, cancer is a continental disease. Approximately 20% to 25% of people die of cancer and, directly or indirectly, nearly all families within the EU are affected. Over the past several decades, even if the health systems have remained under the control of the individual EU Member States, the interdependence of various elements of health care politics across the EU has increased. One of the primary drivers of the EU's actions on cancer has been the influence of patient advocacy organizations. The EU Council's conclusions on reducing the burden of cancer that were adopted in June 2008 are regarded as one of the most significant achievements by patient organizations. Over the last few years, the EU Commission has recognized that cancer treatment and care should be multidisciplinary, involving the cooperation of oncologic surgery, medical oncology, radiation oncology, psychosocial support and, most importantly, rehabilitation and palliative care. Health care policymakers at a national level have been invited to take into account the psychosocial needs of cancer patients and improve their quality of life through support and palliative care, and also through rehabilitation measures aimed at facilitating an early return to work. After improving joint collaboration strategies, EU Member States are now ready to recognize the supranational role of the European Cancer Patient Coalition (ECPC) in cancer control. In this direction, considerable resources have been invested to produce EU cancer statistics so as to support the calls by the ECPC for evidence-based policy change. To meet cancer survivorship-related needs, the ECPC at the EU level and ECPC member organizations at the national level have promoted initiatives and research projects aimed at developing an EU Survivorship Care Plan, which should provide a benchmarking after the completion of primary treatment. Key priorities called for by the ECPC include the timing and content of follow-up, rehabilitation, raising awareness of both short-term and long-term treatment-related effects, health maintenance, information regarding legal protections, and psychosocial support services.
The first objective has been to evaluate the different health conditions over time so that subgroups of cancer patients with different rehabilitation needs also may return to normal (or near-normal) life. In Italy, for example, the Italian Federation of Volunteer-Based Cancer Organizations (FAVO), with the collaboration of population-based cancer registries and leading cancer institutes, has performed a survey to describe the experiences of cancer patients after diagnosis to quantify cancer rehabilitation needs. Historically, cancer registries have been the primary source of cancer burden indicators, and they have been shown to be able to collect relevant data at a population level to examine rehabilitation services (civil invalidity, home assistance, and supports) obtained by cancer survivors. Another relevant example in this field is the PROFILES (Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship) registry, which has demonstrated the importance of rehabilitation programs in improving a patient's return to work after cancer treatment in long-term cancer survivors.
In keeping with the long-term assessment of cancer survivors, another major goal for the survivorship care plan is to establish a comprehensive care summary and follow-up (to be discussed with patients) for those patients completing primary treatment. To develop appropriate recommendations, the ECPC has asked the European Society for Medical Oncology to join and called on the EU Commission to support this initiative. In Italy, the Italian Federation of Volunteer-Based Cancer Organizations (FAVO) has developed a joined initiative involving the Italian Association of Medical Oncology (AIOM), the Italian Association of Oncological Radiotherapy (AIRO), and the Italian Society of General Medicine (SIMG) to formulate recommendations providing information on long-term cancer-related and treatment-related effects, as well as tertiary prevention.
Welfare and job protection benefits will need to play a key role within cancer rehabilitation programs because they are essential to improving the quality of life for cancer survivors and to help them return to a normal life after cancer treatment. A study commissioned by the European Parliament's Committee on Employment and Social Affairs confirmed the need for patients to return to work as soon as possible, and suggested that employers can play a significant role with patient organizations. Italy's most influential governmental authorities have heeded requests from cancer organizations for legislation that addresses these issues, and as a result changes have been introduced into existing legislation. For example, in the fields of welfare and health care and public and private employment, equal treatment for all cancer patients and communication/awareness campaigns, including specific programs to be performed at the European national and local levels, have been introduced.
The ECPC is committed to documenting, at the European level, the results obtained by research studies at a national level and to undertake joint projects to develop policies to protect cancer survivors, with a special emphasis on issues of employment. The ECPC believes that increased collaboration with partners in the United States, including the American Cancer Society and the National Cancer Institute, is necessary to ensure that the health needs of cancer survivors are understood and policies are drafted to support the cancer community in responding to the health care needs of survivors. The ECPC would welcome a joint summit in the European Parliament between the US and the EU cancer communities so as to develop an EU cancer survivorship plan to be proposed in a European Parliament resolution.