2
The Role of Comprehensive Cancer Centers in Survivorship Care Wim H. Van Harten, MD, PhD 1 ; Angelo Paradiso, MD, PhD 2 ; and Michelle M. Le Beau, PhD 3 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 dis- cussed 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 mul- tidisciplinary approach to care and research. 2 Thus, there is a need to identify those services that are required by each survi- vor, 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/cen- ters/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 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; [email protected] 1 Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands; President, Organization of European Cancer Institutes, Brussels, Belgium; 2 National Cancer Research Centre, Giovanni Paolo II Cancer Institute, Bari, Italy; Chairman of Education and Training, Organization of European Cancer Institutes, Brussels, Belgium; 3 Section of Hematology and Oncology and the Comprehensive Cancer Center, University of Chicago, Chicago, Illinois; President, Association of American Cancer Institutes, Pittsburgh, Pennsylvania. 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 edi- tors, the American Cancer Society, John Wiley & Sons Inc, or the National Cancer Research Centre Istituto Tumori “Giovanni Paolo II” Bari. DOI: 10.1002/cncr.28054, Received: January 25, 2013; Accepted: January 31, 2013, Published online May 20, 2013 in Wiley Online Library (wileyonlinelibrary.com) 2200 Cancer June 1, 2013 Afterword

The role of comprehensive cancer centers in survivorship care

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The Role of Comprehensive Cancer Centersin Survivorship Care

Wim H. Van Harten, MD, PhD1; Angelo Paradiso, MD, PhD2; and Michelle M. Le Beau, PhD3

Considering that survival trends in most tumors are rapidly increasing and may nearly double by 2025,1 establishing theneeds of cancer survivors and survivor groups, including designing appropriate and effective programs and organizing themin an efficient and cost-effective way, is a vital goal. In this supplement, several aspects of survivorship care have been dis-cussed by European and American experts, paying specific attention to medical and social problems such as the long-termtoxic effects of cancer treatments, the education of stakeholders, rehabilitation programs, and employment challenges. Theseexperts have shown the emergence of a complex scenario with multifaceted aspects, which will require an integrated and mul-tidisciplinary approach to care and research.2 Thus, there is a need to identify those services that are required by each survi-vor, and to determine when these services are most effective. Furthermore, as oncologists, we have to determine whichsurvivors 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, andthe characteristics of the host are each thoroughly investigated. Such studies, which hopefully will lead to personalizedpatient-centered approaches to care, require knowledge of a complex clinical or biological picture. In conclusion, bothfrom the viewpoint of patient empowerment and cost-effectiveness, developing more appropriate care programs for cancersurvivors 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), thesecenters can play a crucial role in this emerging field because of their strength in translational research, andbecause the full spectrum of treatments is available for patients throughout their clinical course, from the pointof diagnosis through long-term survivorship. Furthermore, CCCs can play a key role in research and treatmentdevelopment based on their strong tradition of providing curative and palliative oncology care and their insightsinto the various patient subsets and their respective problems; such specialized knowledge should be combinedwith expertise from the rehabilitation field.

CCCs represent a unique structure in which underestimated issues of cancer survivors could be evaluated andaddressed. For example, specific programs focusing on fertility preservation and sexuality for cancer survivors have beeninitiated in several CCCs (eg, mskcc.org/cancer-care/survivorship and hopkinsmedicine.org/kimmel_ cancer_center/cen-ters/cancer_survivorship).

From a policy perspective, both the Association of American Cancer Institutes (AACI),3 with its cluster of 95 of thepremier academic and free-standing cancer research centers in the United States, and its European counterpart, the

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; [email protected]

1Netherlands Cancer Institute, Antoni van Leeuwenhoek Hospital, Amsterdam, the Netherlands; President, Organization of European Cancer Institutes, Brussels,

Belgium; 2National Cancer Research Centre, Giovanni Paolo II Cancer Institute, Bari, Italy; Chairman of Education and Training, Organization of European Cancer

Institutes, Brussels, Belgium; 3Section of Hematology and Oncology and the Comprehensive Cancer Center, University of Chicago, Chicago, Illinois; President,

Association of American Cancer Institutes, Pittsburgh, Pennsylvania.

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 edi-

tors, the American Cancer Society, John Wiley & Sons Inc, or the National Cancer Research Centre Istituto Tumori “Giovanni Paolo II” Bari.

DOI: 10.1002/cncr.28054, Received: January 25, 2013; Accepted: January 31, 2013, Published online May 20, 2013 in Wiley Online Library

(wileyonlinelibrary.com)

2200 Cancer June 1, 2013

Afterword

Organization of European Cancer Institutes (OECI),4

which is composed of a network of more than 71 Europeancancer institutes, face challenges in which CCCs can playan important role. Establishing a treatment infrastructurein survivorship care and cancer rehabilitation would alsoprovide a setting in which new treatment programs can betested and proper research conducted.

But what is the actual need for rehabilitation persubgroup characteristics? How can we develop cost-effec-tive treatments as part of the treatment pathway? What isthe best design of services? How can we serve patients wholive a long way from the treatment center? Can patients beempowered to assume the management of their ownsituation?

The organizations of CCCs in Europe (OECI) andthe United States (AACI) have an opportunity to share ex-pertise to address these issues. At the beginning of thethird millennium, few cancer centers provided compre-hensive services for survivors across all age groups. Insome of these CCCs, the model of the survivorship clinichas now been explored, mainly aimed at addressing thelong-lasting or late-onset effects of cancer therapy.Although several well-established programs for cancersurvivors currently are available in CCCs, many are stillevolving.

Is there room for the further improvement of CCCsin the cancer survivorship area? Without a doubt. Devel-oping solutions for many of the remaining questions willrequire collaborative efforts, such as the promotion oflarge trials, clinicobiological studies, and longitudinalapproaches. Clearly, these are expensive and time-con-suming, and call for collaborative projects at the interna-tional level. In this regard, the European ResearchFramework Cooperation Work Programme for Health2013 is specifically looking for collaborative, investigator-driven projects aimed at improving the quality of life ofcancer survivors (cordis.europa.eu/fp7/health/). Similarly,the US National Institutes of Health recently announcedfunding opportunities for specific interventions amongcancer survivors (grants.nih.gov/grants/guide/PAR-12-229). They represent compelling opportunities to planand conduct multicenter trials with the potential toinvolve CCCs from both Europe and the United States.Another interesting aspect is represented by bioethics.Ethics committees supporting CCCs were previously con-cerned with end-of-life matters but, with the growth ofsurvivorship initiatives, they are now expanding theirpurview to consider the totality of cancer care.

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

� Understanding the biological mechanisms that lead toimpairments in specific survivor or cancer patient sub-groups. The strong interaction between variouspartners 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 patientgroups are needed for this.� Developing easily accessible case-by-case care

approaches that fit into survivorship care planningand can be adapted for diffusion throughout the healthcare system. The geographical leadership role indeveloping cancer care by CCCs positions them wellfor this role.

The unique and multidisciplinary perspective of aCCC regarding the “survivorship problem” focuses on itscomplexity, and identifies key issues for further research.However, it remains an important social problem andthere is a need to incentivize survivorship care planning.The ongoing attempt in the United States to reintroducethe Comprehensive Cancer Care Improvement Act of2012, which will provide Medicare reimbursement forcomplete survivorship care plans,5 is an example of howthis goal is being pursued.

FUNDING SUPPORTThis supplement was sponsored by the National Cancer ResearchCentre Istituto Tumori “Giovanni Paolo II” Bari (Italy) throughthe Italian Ministry of Health-funded research project“Multidimensional assessment of long-term cancer survivorsincluding discovery of genetic bases of susceptibility, depressivestage, prevention of affective disorders,” and through intramuralfunding of the American Cancer Society’s Behavioral ResearchCenter.

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

CONFLICT OF INTEREST DISCLOSURESThe authors made no disclosures.

REFERENCES

1. Parry C, Kent EE, Mariotto AB, Alfano CM, Rowland JH. Cancersurvivors: a booming population. Cancer Epidemiol Biomarkers Prev.2011;20:1996-2005.

2. Elena JW, Travis LB, Simonds NI, et al. Leveraging epidemiologyand clinical studies of cancer outcomes: recommendations and oppor-tunities for translational research. J Natl Cancer Inst. 2013;105:85-94.

3. Association of American Cancer Institutes. aaci-cancer.org.

4. Organization of European Cancer Institutes. European Economic In-terest Grouping. oeci-eeig.org. Accessed March 12, 2013.

5. GovTrack.us. S. 2097 (112th): Comprehensive Cancer Care ImprovementAct of 2012. http://www.govtrack.us/congress/bills/112/s2097. AccessedMarch 12, 2013.

CCCs in Survivorship Rehabiliation Care/Van Harten et al.

Cancer June 1, 2013 2201