J Cancer Surviv (2007) 1:1–4 DOI 10.1007/s11764-006-0001-y
EDITORIAL
Optimizing cancer survivorship Michael Feuerstein
Published online: 5 December 2006 # Springer-Verlag 2006
Abstract This paper provides an introduction to a new journal dedicated to research and practice that can improve the quality of health and well-being among cancer survivors worldwide. Given the increased number of cancer survivors and the anticipated growth of this population, the development of new knowledge and innovative applications are more pressing than ever. Cancer survivorship is a major public health challenge. This paper provides a brief description of the target population and the rationale for such a journal. The scope and mission of this journal along with examples of potential topics are also presented. Justification is provided for both multidisciplinary and interdisciplinary perspectives. The Journal of Cancer Survivorship: Research and Practice invites submissions from researchers, research-oriented practitioners and those involved in innovative policy matters to submit their scholarly work to help improve the lives of cancer survivors.
search for ways to prevent cancer, as well as the need to identify truly effective treatment with few side effects, we need to work more aggressively at maximizing the long term health and well being of survivors. While there are several definitions, survivor often refers to those who are living with varying levels of health and well being after a cancer diagnosis. It is important to remember that survivors remain patients. They can experience a number of health challenges and threats to health, overall well being and function. Improving the type and quality of long term health care, as well as efforts to better understand and maximize their quality of life, need to be top priorities. Many around the world have worked diligently to improve the health and quality of life of cancer survivors, particularly over the past decade yet much more needs to be accomplished.
Keywords Cancer survivorship . Research . Practice . Policy . Multidisciplinary . Interdisciplinary . Public health
Why a new journal related to cancer survivorship?
The challenge As the incidence of a disease increases and mortality goes down, prevalence rises. This is exactly what has occurred with many types of cancer. As a result, there are more people living with the diagnosis than ever before. While this is great news and attests to the tireless efforts of thousands of scientists, clinicians, and survivors world wide, there is now a new challenge that confronts us. While no one would doubt the need for efforts to continue to M. Feuerstein (*) Departments of Medical and Clinical Psychology and Preventive Medicine and Biometrics, Uniformed Services University of the Health Sciences, 4301 Jones Bridge Rd., Bethesda, MD 20814-4799, USA e-mail:
[email protected]
There are several excellent journals that publish work related to cancer survivorship. So...why another? The motivation behind the “Journal of Cancer Survivorship: Research and Practice” is not to duplicate what is currently available but rather to facilitate the integration of research and practice among the several disciplines involved in cancer survivorship. The goal is to generate new ideas, new research paradigms, and innovative approaches to preventing and managing the many challenges and opportunities that confront survivors over their lifetime. I received very thoughtful comments regarding the concept of this journal while communicating with potential editorial board members, and for that I am grateful. The essence of these comments, other than those that indicated “very timely” includes the following: &
Cancer survivorship is a peculiar American concern so why the international aspect, especially when the health systems are so different?
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There is a preoccupation with the health and quality of life of cancer survivors especially in the U.S. Why is cancer different than any other health problem? Who are cancer survivors? How can they be better defined/classified? Heath care systems in some countries, particularly in the U.S., are so fragmented that data and policy cannot be generalized and the information cannot be used across countries. Health reform related to cancer survivors, particularly in the U.S., is driven by the strong lobby of “survivors” and their families, not from data, so why the focus on the need for evidence based policy?
Many of these comments suggest that the challenge of cancer survivorship is particularly an American phenomenon. I disagree. While there are clearly variations in health “systems” around the world and differences in how cultures and individuals respond to life threatening illness these differences can enlighten us in our efforts to improve the lives of cancer survivors world wide. The rising prevalence of cancer survivors and my own experience as a cancer survivor motivated this effort and highlighted the need for such a journal. Also the literature clearly calls for the need for more integrative research and practice from both population and individual health perspectives. The confluence of these factors served as the stimulus for the creation of this scientific journal.
The mission It is anticipated that the synergy from such an effort will generate new ideas, new approaches, and add to the efforts that are currently directed at improving the health and well being of cancer survivors. The concerns brought to the foreground by the U.S. Centers for Disease Control’s, “A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies” (2004) [1] and the report “From Cancer Patient to Cancer Survivor: Lost in Transition” [4], recently published by the Institute of Medicine, highlights many of the topics that ideally will be addressed by research published in this journal. Since cancer survivorship is a world wide public health challenge, innovative scientific contributions, evidence based policy, and specific solutions from around the world are welcome. The journal will publish studies related to the population health of cancer survivors, in order to provide a more complete picture of the epidemiology of cancer survivorship, including description, etiology and intervention. Topics might include studies on symptoms over time and their risk factors, burden (broadly conceived), natural history that describes cancer survivorship over time, and research
directed at risk factor reduction. Methodology and research related to cancer survival itself can be applied to important questions in cancer survivorship. This work has a rich tradition that has helped to generate data to inform health policy and can have a similar influence world wide. It is expected that such an approach can serve as a model for population health studies in the area of cancer survivorship. Research on the improvement of health care services to maximize long term health, including the refinement and expansion of existing cancer survivor services and creative cost-effective innovations within oncology and primary care, will also be of interest. Optimal long term comprehensive health surveillance (general health, cancer, behavioral health), and innovative models of health care delivery for problems faced by cancer survivors, are topics that are also consistent with the overall mission of this new journal. The journal is also interested in studies related to individual health and well-being, ranging from studies on the biological or biobehavioral mechanisms underlying persistent symptoms such a fatigue, pain, depression and cognitive limitations, to their prevention, all fall within the scope of this new venue. Studies on genetic markers of highly resilient survivors or other biological factors associated with optimal function in survivors are also welcome. Research on factors that explain why cancer survivors continue to smoke or engage in other health risk behaviors would also be of interest. Investigation of the development and evaluation of effective long term smoking cessation programs in cancer survivors, research on approaches to enhance exercise adoption and maintenance and investigations on the biological effects of exercise on cancer related fatigue (years after diagnosis) are other examples. The development of new measurement technologies to be used in research and practice is an important topic in cancer survivorship, and falls within the province of this journal. Long term health care for childhood survivors of cancer can serve as one useful model for long term care in adult survivors. Submissions related to innovations in long term care of child survivors, if they can inform us about adult care, would be welcome as well. Specific topic areas that are consistent with the mission of this journal include (not in order of priority): behavioral health (depression, distress, family, relationships, social support, spirituality), biobehavioral processes (psychoneuroimmunology, biological plausibility studies in general), functional outcomes (work, family, recreation, physical capacity, neurocognitive function, reproduction), heath behavior (exercise, nutrition, smoking, physical activity), health risk reduction, health services (evidence based care, chronic care, survivor navigators), innovative research strategies/questions (both quantitative and qualitative), innovative theories, models and analytic approaches, policy proposals (health, employment, family, survivor advocacy), population health (survival,
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recurrence, burden, description of patterns of problems over time, risk factor epidemiology, economic impact, including cost benefit of interventions), survivor and provider communication and education (health information, e-health, tele-health), secondary prevention (complimentary and alternative medicine, innovative drug applications, rehab approaches, occupational health approaches, administrative changes), advanced stages, end of life, and symptom burden (pain, fatigue, cognitive changes). This list of topics is not intended to be all inclusive. Please do not assume if your work is not in one of these areas we will not be interested in it. I provided a working list of some of the areas that can impact the heath and well being of cancer survivors. To those who consider the journal “too ambitious” or “not focused, I respond....... please keep an open mind. This journal represents another venue to help improve the lot of cancer survivors. This may sound trite, simple minded or even unsophisticated scientifically, however, achieving this is not simple. Cancer survivorship is complex and cuts across many topics. True advancements will need to occur in many areas of research and practice, and will require the active involvement of several disciplines.
Helping all cancer survivors While certain cancer survivors are symptom-free, highly functional and simply go about “business as usual” years after diagnosis, there are many who continue to experience challenges. Even those who fall into the enviable “problemfree” category, require high quality follow up care for preventive health maintenance, potential recurrence and late effects of treatment. It is our responsibility as health care researchers and providers to facilitate changes that can improve the quality of care and life for all long term survivors. Some of the problems experienced are subtle and require a more fine-grained and creative approach than used in the past, while others can be solved with the application of programmatic and persistent sound research, and evidence based practice and policy that has been helpful for other major chronic illnesses. Also, there are the prevalent, yet to be fully explained, differences in biology, psychology, and health services access, quality and cost. Disparity matters will be covered as well.
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disciplinary) or through active collaboration (interdisciplinary) to address the challenges related to the health, overall function, and well being faced by cancer survivors. Both approaches are encouraged. The editorial board includes seasoned researchers and scientist-practitioners from several different disciplines and many countries whose work directly or indirectly addresses the challenges of cancer survivors. There are also board members who are more junior researcher-practitioners and whose work offers new perspectives and approaches. They all have graciously agreed to participate in this effort. Their involvement truly makes this a multidisciplinary venue that will consider many aspects of survivorship. The potential interplay of these leaders will help facilitate this effort in a scientifically sound, thoughtful and creative way. As a result it is hoped that many cancer survivors will benefit. A quick review of the board will indicate that a comprehensive cross-section of specialties and topics are represented. If I offended anyone by not including you on the editorial board, it was not my intention. Please send your work to us. Cancer survivors need it. Also, it should be emphasized that the editorial board was not “hand chosen” by some agency or advocacy group and doesn’t represent a list of “friends”. The process I followed was to search the literature and find leaders who have published what I perceive to be very important work that has influenced the health and well being of cancer survivors. Although there are many on the board they represent diverse areas. I take full responsibility for the choices I made. My only agenda was to pull leaders together who can help guide this effort forward. While readers could argue that the international representation of the board could be greater, it is hoped that we will receive scientifically sound and thoughtful contributions from researchers and clinicians in many parts of the world. The approach the journal wishes to take will only work if different specialties publish relevant work in this journal. We welcome receiving your original research, systematic, metaanalytic or conventional reviews, papers that facilitate innovation, or any academic contribution that falls within the scope of this journal. We will also publish clinical cases or policy position papers, from time to time, if they help elucidate an innovative approach to cancer survivorship that could benefit from future research or discourse. The journal will be indexed in major search engines and it is anticipated that once the journal has a track record, Medline will also index it.
A survivors’ view Multidisciplinary perspective The Journal of Cancer Survivorship: Research and Practice will offer a unique venue for innovative work from a number of disciplines either working side by side (multi-
As a survivor of a malignant brain tumor (anaplastic astrocytoma stage 3–craniotomy (biopsy), 60 gy of radiation and 12 months of chemotherapy–4.5 years post diagnosis) and a scientist-practitioner in the areas of behavioral
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medicine and public health (pain, occupational health, chronic illness, health services), I see a very strong need for such a journal. My current work in the area has also helped me recognize the importance of such an effort [2, 3]. The timing is right, given the increased number of survivors around the world, the expectation of increasing numbers over the next several decades, and the multiple challenges that many of us experience. Cancer survivorship has become a major public health problem and the challenges are many. Currently, there is no single journal that provides a truly multidisciplinary or interdisciplinary perspective and exclusively focuses on research and practice that can impact the lives of cancer survivors over the long term.
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References 1. Centers for Disease Control and Prevention (CDC) (2004). A national action plan for cancer survivorship: Advancing public health strategies. Retrieved August 1, 2006, from the Lance Armstrong Foundation website: http://www.livestrong.org/atf/cf/ {FB6FFD43-0E4C-4414-8B37-0D001EFBDC49}/NationalAction Plan.pdf; 2004. 2. Feuerstein, M. (Ed.) (2007). The handbook of cancer survivorship. New York: Springer. 3. Feuerstein, M., & Findley, P. (2006). The cancer survivor’s guide: The essential handbook to life after cancer. New York, NY: Marlowe & Company. 4. Hewitt, M., Greenfield, S., & Stovall, E. (2006). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies.
