The role of comprehensive cancer centers in survivorship care

Authors

  • Wim H. Van Harten MD, PhD,

    Corresponding author
    1. Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands; President, Organization of European Cancer Institutes, Brussels, Belgium
    • Corresponding author: Wim Van Harten, MD, PhD, Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Plesmanlaan 121 1066 CX Amsterdam, the Netherlands; Fax: (011) 31 20 5121944; w.v.harten@nki.nl

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  • Angelo Paradiso MD, PhD,

    1. National Cancer Research Centre, Giovanni Paolo II Cancer Institute, Bari, Italy; Chairman of Education and Training, Organization of European Cancer Institutes, Brussels, Belgium
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  • Michelle M. Le Beau PhD

    1. Section of Hematology and Oncology and the Comprehensive Cancer Center, University of Chicago, Chicago, Illinois; President, Association of American Cancer Institutes, Pittsburgh, Pennsylvania
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  • European-American Dialogues on Cancer Survivorship: Current Perspectives and Emerging Issues

  • 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.

Considering that survival trends in most tumors are rapidly increasing and may nearly double by 2025,[1] establishing the needs of cancer survivors and survivor groups, including designing appropriate and effective programs and organizing them in an efficient and cost-effective way, is a vital goal. In this supplement, several aspects of survivorship care have been discussed by European and American experts, paying specific attention to medical and social problems such as the long-term toxic effects of cancer treatments, the education of stakeholders, rehabilitation programs, and employment challenges. These experts have shown the emergence of a complex scenario with multifaceted aspects, which will require an integrated and multidisciplinary approach to care and research.[2] Thus, there is a need to identify those services that are required by each survivor, and to determine when these services are most effective. Furthermore, as oncologists, we have to determine which survivors need our time and attention for extended periods, and which are best cared for by their primary care physicians.

These questions represent an open area for research in which new primary treatments, the biology of the tumor, and the characteristics of the host are each thoroughly investigated. Such studies, which hopefully will lead to personalized patient-centered approaches to care, require knowledge of a complex clinical or biological picture. In conclusion, both from the viewpoint of patient empowerment and cost-effectiveness, developing more appropriate care programs for cancer survivors on a case-by-case basis appears to be very fitting.

Although only a minority of cancer patients are treated at comprehensive cancer centers (CCCs), these centers can play a crucial role in this emerging field because of their strength in translational research, and because the full spectrum of treatments is available for patients throughout their clinical course, from the point of diagnosis through long-term survivorship. Furthermore, CCCs can play a key role in research and treatment development based on their strong tradition of providing curative and palliative oncology care and their insights into the various patient subsets and their respective problems; such specialized knowledge should be combined with expertise from the rehabilitation field.

CCCs represent a unique structure in which underestimated issues of cancer survivors could be evaluated and addressed. For example, specific programs focusing on fertility preservation and sexuality for cancer survivors have been initiated in several CCCs (eg, mskcc.org/cancer-care/survivorship and hopkinsmedicine.org/kimmel_cancer_center/centers/cancer_survivorship).

From a policy perspective, both the Association of American Cancer Institutes (AACI),[3] with its cluster of 95 of the premier academic and free-standing cancer research centers in the United States, and its European counterpart, the Organization of European Cancer Institutes (OECI),[4] which is composed of a network of more than 71 European cancer institutes, face challenges in which CCCs can play an important role. Establishing a treatment infrastructure in survivorship care and cancer rehabilitation would also provide a setting in which new treatment programs can be tested and proper research conducted.

But what is the actual need for rehabilitation per subgroup characteristics? How can we develop cost-effective treatments as part of the treatment pathway? What is the best design of services? How can we serve patients who live a long way from the treatment center? Can patients be empowered to assume the management of their own situation?

The organizations of CCCs in Europe (OECI) and the United States (AACI) have an opportunity to share expertise to address these issues. At the beginning of the third millennium, few cancer centers provided comprehensive services for survivors across all age groups. In some of these CCCs, the model of the survivorship clinic has now been explored, mainly aimed at addressing the long-lasting or late-onset effects of cancer therapy. Although several well-established programs for cancer survivors currently are available in CCCs, many are still evolving.

Is there room for the further improvement of CCCs in the cancer survivorship area? Without a doubt. Developing solutions for many of the remaining questions will require collaborative efforts, such as the promotion of large trials, clinicobiological studies, and longitudinal approaches. Clearly, these are expensive and time-consuming, and call for collaborative projects at the international level. In this regard, the European Research Framework Cooperation Work Programme for Health 2013 is specifically looking for collaborative, investigator-driven projects aimed at improving the quality of life of cancer survivors (cordis.europa.eu/fp7/health/). Similarly, the US National Institutes of Health recently announced funding opportunities for specific interventions among cancer survivors (grants.nih.gov/grants/guide/PAR-12-229). They represent compelling opportunities to plan and conduct multicenter trials with the potential to involve CCCs from both Europe and the United States. Another interesting aspect is represented by bioethics. Ethics committees supporting CCCs were previously concerned with end-of-life matters but, with the growth of survivorship initiatives, they are now expanding their purview to consider the totality of cancer care.

The priorities in research and development in this field, especially for CCCs, are:

  • Understanding the biological mechanisms that lead to impairments in specific survivor or cancer patient subgroups. The strong interaction between various partners in translational research is essential for this.
  • The identification of survivor subgroups most in need, and the design of appropriate general, disease-related, and symptom-specific care programs. Large patient groups are needed for this.
  • Developing easily accessible case-by-case care approaches that fit into survivorship care planning and can be adapted for diffusion throughout the health care system. The geographical leadership role in developing cancer care by CCCs positions them well for this role.

The unique and multidisciplinary perspective of a CCC regarding the “survivorship problem” focuses on its complexity, and identifies key issues for further research. However, it remains an important social problem and there is a need to incentivize survivorship care planning. The ongoing attempt in the United States to reintroduce the Comprehensive Cancer Care Improvement Act of 2012, which will provide Medicare reimbursement for complete survivorship care plans,[5] is an example of how this goal is being pursued.

FUNDING SUPPORT

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.

Co-sponsored by Organization of European Cancer Institutes (OECI) and the Association of American Cancer Institutes (AACI).

CONFLICT OF INTEREST DISCLOSURES

The authors made no disclosures.

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