European-American Dialogues on Cancer Survivorship: Current Perspectives and Emerging Issues, Supplement to Cancer.
Article first published online: 20 MAY 2013
Copyright © 2013 American Cancer Society
Supplement: European-American Dialogues on Cancer Survivorship: Current Perspectives and Emerging Issues
Volume 119, Issue Supplement S11, pages 2089–2093, 1 June 2013
How to Cite
de Lorenzo, F. and Haylock, P. (2013), Preface. Cancer, 119: 2089–2093. doi: 10.1002/cncr.28063
This supplement was guest edited by Vittorio Mattioli, MD (NCRC, Bari, Italy) and Kevin Stein, PhD (American Cancer Society, Atlanta, Georgia) and was produced with the authoritative contribution of 58 authors from the European Union and the United States. The primary aims are to highlight the potential differences between European and American approaches to cancer survivors' issues, increase coordination among oncologists and other primary care providers, and aid the development of a shared care model that can improve the quality of cancer care.
The opinions or views expressed in this supplement are those of the authors and do not necessarily reflect the opinions or recommendations of the journal editors, the American Cancer Society, John Wiley & Sons Inc, or the National Cancer Research Centre Istituto Tumori “Giovanni Paolo II” Bari.
- Issue published online: 20 MAY 2013
- Article first published online: 20 MAY 2013
- Manuscript Accepted: 20 SEP 2012
- Manuscript Received: 7 AUG 2012
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.
Cancer Survivorship: The United States as Leaders and Learners
Pamela J. Haylock, PhD, RN, FAAN
Anyone in the United States who has followed the progress of the survivorship movement must commend Dr. de Lorenzo and his colleagues throughout Europe. Our European colleagues have in many ways already surpassed the progress in the United States, which has at least a 30-year history. Dr. de Lorenzo describes the strong collaborative efforts of governments, researchers, and clinicians throughout Europe, who in a relatively short time span have launched a vibrant and creative survivorship consortium.
Over nearly 3 decades, the United States has established a leading role in a global survivorship movement. Fitzhugh Mullan introduced the notion of cancer survivorship in 1985, and the National Coalition of Cancer Survivorship (NCCS) coined and defined the terms “survivor” and “survivorship” the following year. The NCCS charter defines “survivor” in this way: “From the time of discovery and for the balance of life, an individual diagnosed with cancer is a survivor.” Many if not most grass roots and national advocacy groups, as well as the National Cancer Institute's Office of Cancer Survivorship (OCS), use some rendition of that definition with slight variations, such as the OCS's addition of family and caregivers as survivors. Much of the work of advocacy groups, from 1986 to present, concerns collective efforts to affect public policy: advocating for increases in cancer research funding and support for the National Cancer Institute. Today, cancer-related advocacy initiatives continue to focus on public policy and access to care, but advocacy efforts also address the social, emotional, and financial challenges associated with cancer treatment; both short-term and long-term effects of the disease and its treatment; and issues imposed on survivors by the unique public/private, expensive, fragmented, and convoluted American health care system.
The US survivorship movement was initiated and is sustained by survivors who formed constituency groups and associations as a collective voice for individuals, families, and communities affected by cancer. More than a decade elapsed between the incorporation of the NCCS, its early public policy efforts, and the 1996 establishment of the OCS, which was charged with enhancing the length and quality of life of cancer survivors. Another decade had passed when the US Congress asked for the review of survivorship issues that resulted in the Institute of Medicine report entitled From Cancer Patient to Cancer Survivor: Lost in Transition, published in 2006. The American survivorship movement now encompasses nearly 3 decades of experiences, fits and starts, setbacks, disappointments, and of course moments of success and celebration. As Hewitt et al note in the preface, “…there are times when trends in medical science, health services research, and public health awareness converge to forge a new realization,” expressing optimism that that convergence is finally occurring.
Civil groups (the grass roots and other advocacy groups) have been and continue to be critically important in providing the face and voice of the US survivorship movement. The tendency to form associations or societies for a common action characterizes American culture, noted nearly 2 centuries ago by de Tocqueville during his 10-month stay in America. American nurses were among the first survivorship advocates to bring the concept to colleagues outside the United States during the 2006 International Society of Nurses in Cancer Care conference in Toronto, Ontario, Canada and the Federation of European Cancer Societies' European Cancer Conference in Barcelona, Spain in 2007.9 What is considered by some to be a watershed event occurred in 2008, with the first “study day” on cancer survivorship in Bari, Italy, in which some of the nation's key leaders in cancer care opinion were not only present but were active participants. They reflected on the US experience, considered lessons learned, and moved to advance survivorship in ways that are consistent with governmental health initiatives, health care and cancer care delivery systems, and perceived survivor needs. Since that time, the cause of survivorship throughout Europe continues to gain momentum, and in many ways already surpasses the survivorship movement in the United States.
Does the concept of survivorship translate from the United States to languages and cultures of other nations and populations? Interpretation and acceptance of the term “cancer survivor” presents just 1 translation dilemma. Although far from universally accepted, the term “survivor” as used in the United States is an attempt to reflect empowerment, control, and self-advocacy among individuals affected by cancer, with the hope that the use of terms and philosophies reflecting victimization and hopelessness, including “victim,” “sufferer,” and even “patient,” would diminish and someday disappear. Kahn et al conducted a qualitative study in the United Kingdom and found widespread rejection of the term, with its implied high risk of death, the suggestion that survival depends on personal characteristics, and assumption of an unwanted advocacy role. Disputes around survivorship language continue to take place in the United States as they surely will throughout the world.
It is evident that American citizens, including cancer survivors, want a holistic approach to care; a concentration on health, wellness, and the process of healing; and self-actualization instead of the single-minded focus on the treatment of an existing ailment.[12-14] At the outset of the American survivorship movement, survivors were given not-so-subtle messages that they were lucky to be alive, and should be grateful; complaints about anxiety, fear, and real and anticipated short-term and long-term effects of treatment fell mostly on deaf ears. Over time, the length of survival became only 1 measure of success, and our focus began to include the quality of the lives saved. Survivors increasingly reported that learning to live with posttreatment challenges is not good enough. Nevertheless, essential cornerstones of survivorship, namely knowledge, empowerment, control, and self-advocacy, are often at odds with the basic tenants of the paternalistic, physician-dominated US health care system, an ongoing source of challenges to advancing cancer survivorship.
In the United States, health remains a private matter, not a public responsibility. The United States stands alone as the only country in the Western world that does not guarantee each citizen a basic level of health insurance and access to health care services. The United States lacks a national health policy and continues to focus on cure, rather than prevention and the preservation of health. For Americans, poverty, not race or ethnicity, is a major determinant of who lives and who dies. Health care system-generated dilemmas are at play throughout the cancer trajectory, from cancer prevention, early detection, treatment, and survivorship, centering around access to providers with survivorship-related expertise and technology, costs, and questions of who pays for what.
A contentious debate in the American cancer care community involves the determination of which health care disciplines and even subspecialties within each discipline are now or should be prepared to accept roles in survivorship care planning and delivery (eg, oncology specialists or primary care physicians? Oncology nurse specialists or nurse case managers?). Responsibility and accountability have yet to be designated. Limited numbers of physicians, nurses, social workers, nutritionists, and financial counselors with expertise in issues of survivorship are available for the growing population of survivors; workforce issues are of major concern. Private and public payer sources extend limited payment for cancer survivorship services provided by most disciplines, services that require expert knowledge and substantial commitments of time.
Getting to accessible and quality survivorship care in America mandates drastic and creative revisions to the status quo. Rose et al highlighted 6 objectives for a 21st century system: safe, effective, patient-centered, timely, efficient, and equitable. To accomplish this, basic philosophical and cultural shifts must occur in the United States, and in the design and delivery of health care and cancer care. The Institute of Medicine report on oncology workforce issues similarly highlighted the need for cultural changes in health care delivery systems. These changes must include:
- Change the medical (illness) model to a transdisciplinary and holistic (healthiness) model;
- Adapt the definition of “survivor” to guide cancer care delivery to patients, survivors, family, and caregivers from the moment of diagnosis through the remainder of life;
- Reconsider the traditional role of physicians as gatekeepers to health care and survivor care services;
- Look outside the current and traditional roles of health care professions to allow all health care providers to practice at their highest levels of competency and scopes of practice;
- Adapt professional education for health care providers accordingly;
- Devise and define community-based, holistically designed service delivery models that include nontraditional providers; and
- Collaboration with nononcology providers to offer needed services.
Some of these elements are already in place within European models of health care, thereby giving international survivorship advocates, and survivors themselves, significant advantages. Crafting and implementing models that reflect these elements require tremendous political will, multidisciplinary collaboration and cooperation, the ongoing commitment of advocates and survivors, courage, and imagination.
The goal is simple. Survivorship care planning and delivery is an expected part of cancer care, regardless of a survivor's ability to pay, provider specialty, or practice setting. The challenge is getting there. It is time we learn from our European colleagues.
This supplement was sponsored by the National Cancer Research Centre Istituto Tumori “Giovanni Paolo II” Bari (Italy) through the Italian Ministry of Health-funded research project “Multidimensional assessment of long-term cancer survivors including discovery of genetic bases of susceptibility, depressive stage, prevention of affective disorders,” and through intramural funding of the American Cancer Society's Behavioral Research Center.
CONFLICT OF INTEREST DISCLOSURES
The authors made no disclosures.
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