Cancer Survivorship: Optimizing Health and Quality of Life after Cancer

Goal

Reduce the adverse effects of cancer diagnosis and treatment, and improve health-related outcomes for cancer survivors and their families.

Introduction

NCI's Challenge Goal of eliminating the suffering and death due to cancer is squarely aligned with the interests of the 9.6 million cancer survivors in the United States today. While the ultimate goal of eliminating cancer continues to be our long-term commitment, the capacity to dramatically reduce the suffering caused by cancer is within our immediate grasp. The cancer community is making steady progress toward achieving the Department of Health and Human Services (DHHS) Healthy People 2010 goal of 5-year survival for 70 percent of those diagnosed with cancer. Advances in our ability to detect, treat, and support cancer patients have turned this disease into one that is chronic or readily managed for many, and curable for increasing numbers.

NCI leads the nation in championing research on the health and functioning of our growing population of cancer survivors. Research grants that seek to evaluate and improve the post-treatment experience of cancer survivors have increased almost 30 percent in the last year, including a significant focus on interventions that improve psychosocial and health-related outcomes. We are learning more about many things:

• The nature and scope of problems encountered by young adult survivors of childhood cancer.
• The differences between younger and older adults in their responses to treatment.
• Identifying those at risk for adverse health outcomes.
• Provocative new interventions for treatment effects such as fatigue, memory difficulties, and pain.

Despite the fact that the majority of survivors (62 percent) are 5 years or more post-treatment, few studies addressed long-term outcomes until NCI began to sponsor such research, a direction that is now actively pursued by the wider scientific community. To take advantage of this momentum, we need to advance the science in several areas. NCI must work with partners to:

• Expand our capacity to track the health and well-being of cancer survivor populations and their families or caregivers.
• Understand the underlying biologic and genetic mechanisms that may increase survivors' risk for adverse outcomes.
• Broaden the scope of interventions development and testing to include the reduction of cancer-related late morbidity and mortality.
• Explore approaches to promoting optimal post-treatment health behaviors.
• Understand patterns of follow-up care for cancer survivors, including available community resources to deliver care.
• Communicate our findings to both the survivor and healthcare practitioner communities.

The population of cancer survivors continues to grow, a testament to NCI's many successes in preventing cancer from progressing to its later and more virulent stages. These successes include:

• Important progress in the delivery and use of cancer screening.
• Enhancement of early detection technologies.
• Discovery and use of more effective and often multimodal therapies.
• Provision of a broadening array of supportive care and rehabilitative options.
• Increasingly wider adoption of active screening behaviors and healthier lifestyles by those at risk for cancer, as well as by those with a history of the disease.

Nevertheless, we are also deeply committed to addressing the needs of, and providing hope for, those living with and beyond a cancer diagnosis.

We must ensure that sufficient numbers of investigators and clinicians are committed to understanding and caring for cancer survivors. A growing number of grant applications (15 percent in Fiscal Year 2002) are being submitted by investigators new to cancer survivorship research. We must also assure continued training opportunities for clinicians if they are to acquire the knowledge and skills necessary to keep pace with the rapidly changing needs of tomorrow's cancer survivors.

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Progress in Pursuit of our Goals

Discovery

• Exploring the Genetics of Survivorship
• Exploring the Impact of Cancer on the Family
• Expanding Research among Underrepresented/Underserved Survivor Communities
• Discovering Long-Term and Late Effects
• Understanding Research Gaps

Development

• Delivering Best Practices through Partnerships and Consensus Building

Delivery

• Disseminating Research Findings: Communication Tools and Resources

Discovery

Exploring the Genetics of Survivorship

The recent decoding of the human genome is increasing scientists' ability to decipher the genetics of survivorship issues, such as hereditary cancer risk patterns that affect family members and genetic susceptibility to treatment-related late effects. Researchers will increasingly be able to identify, based on the genetic profile of individual patients, which therapies will best treat the cancer while preventing unwanted late effects of treatment. Recent research has begun to reveal some of the potential benefits for cancer survivors and their families that are likely to result from the expansion of our understanding of genetic risk.

• Investigators examined the risk of early-onset cancers in first- and second-degree relatives of survivors of Wilms tumor, one of the few pediatric cancers with well-defined familial and genetic components. They found excess relative risk for cancer in parents of the survivor, and for leukemia in a family member. These results are being validated in larger samples of families.
• The e4 allele of the Apolipoprotein E (apoE) gene has been identified as a potential genetic marker for increased risk of neurocognitive deficits among adult survivors of cancer (breast and lymphoma) who have undergone chemotherapy. NCI is funding research to investigate mechanisms of risk for these late effects using noninvasive techniques such as morphometric magnetic resonance imaging (MRI), functional MRI, diffusion tensor imaging, MR spectroscopy, and positron emission tomography.

Exploring the Impact of Cancer on the Family

As cancer care migrates into the outpatient setting, the economic, physical, and emotional burden on family members is increasing. It is important that we explore the impact of cancer on the millions of family members of all ages affected by this illness, many of whom may themselves be at increased risk for cancer due to shared cancer-causing genes, lifestyle choices, and/or toxic exposures. Over the next several years, NCI will collect population-based data on the impact of major cancers on U.S. families of diverse racial/ethnic and socioeconomic backgrounds. This survey will:

• Generate basic descriptive statistics on the percentage of family households with cancer survivors and caregivers, by demographic characteristics.
• Provide data on the medical, familial, psychosocial, and economic factors that may affect family outcomes.

The data will be made available to researchers and program planners to evaluate the burden of cancer survivorship on the Nation's families and to monitor the success of interventions and educational resources in reducing that burden.

Expanding Research Addressing Underrepresented/Underserved Survivor Communities

In September 2002, NCI convened a meeting to address survivorship issues in minority and medically underserved survivor populations. Held in conjunction with the semiannual board meeting of the Intercultural Cancer Council, the meeting provided an opportunity to discuss research challenges and solutions. Participants reached a consensus on recommendations for collaboration between academic research centers and community organizations, including guidelines for research studies and successful subject recruitment.

NCI has initiated the Cancer Disparities Research Partnership (CDRP) program to investigate survivorship in underserved patient populations. The program will support 5-year cooperative agreements in locations where health disparities exist. The first two awards were given to sites serving Native American and Hispanic populations. Four additional sites will receive funding in 2003.

Discovering Long-Term and Late Effects

In 2003, NCI introduced the Common Terminology Criteria for Adverse Events, Version 3.0. This new measure represents the first comprehensive, multimodality-grading system for reporting the incidence of both acute and late effects of cancer treatment, as well as their duration. Educational tools will be made available to the scientific community. This new scoring system will enable investigators to:

• Compare newer treatments for all cancers with the current regimens.
• Investigate molecular mechanisms for late tissue damage based on the severity of effects experienced by patients.
• Facilitate the development of interventions for use in clinical trials to prevent, reduce, or possibly reverse late effects of cancer treatment.
• Permit the standardized reporting of adverse events and of comparisons of outcomes between trials and institutions.

Understanding Research Gaps

A review of survivorship research of underserved populations identified only 65 studies with sample sizes sufficient to permit detailed comparisons among diverse groups. Populations requiring further study include diverse ethnic groups, those diagnosed at age 65 or older, rural populations, low-income groups, those with limited education, and survivors with less commonly studied types of cancer.

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Development

Delivering Best Practices through Partnerships and Consensus Building

All survivors need ongoing monitoring and surveillance to prevent premature mortality and reduce the morbidity associated with cancer and its treatment. Many Cancer Centers and academic institutions have developed specialized follow-up care clinics and programs for survivors of childhood cancer. In the adult arena, a range of models is being used for follow-up care for survivors in Cancer Centers, community oncology practices, and primary care settings.

However, there has been little consensus about what constitutes optimal care, no coordination of efforts to deliver such care, and no attempts to evaluate program effectiveness, specifically the impact of such programs on survivor outcomes and the cost of care. NCI is bringing people together to focus on the problem through initiatives such as the following:

• NCI, in collaboration with the American Cancer Society, established a Biennial Cancer Survivorship Conference, inaugurated in June 2002. The papers from this conference addressed such topics as:

• Cancer survivorship and aging
• Promoting post-treatment adaptation
• Pathways to psychosocial care
• Family outcomes
• Improving survival in the setting of advanced disease

Prior to the conference, a Webcast town hall meeting was held in celebration of National Cancer Survivors' Day. Designed to bring the consumer's voice to the scientific proceedings, the meeting was attended by more than 100 cancer survivors.

• Two International Workshops on Long-Term Follow-Up Care Programs for Survivors of Pediatric Cancer were convened to formulate a research agenda and establish a working group to:

• Advance the science of follow-up care by identifying and examining the efficacy of models for post-treatment care.
• Determine the optimal frequency, content, setting, and provider for such care.
• Develop best practices for follow-up care for both pediatric and adult survivors.
• Create a database on survivor care and outcomes across follow-up programs and clinics.




• Optimal control of adverse symptoms is a critical part of cancer-related surveillance and medical care. A National Institutes of Health state-of-the-science meeting, Symptom Management in Cancer: Pain, Depression and Fatigue, identified key gaps in our knowledge and delivery of state-of-the-art palliative care, including recognition that:

• Pain is often under-treated, despite the availability of effective interventions.
• Cancer-related depression and fatigue are extremely common and have a profound impact on a patient's well-being.
• Insufficient resources are allocated to studying the occurrence, causes of, and impediments to effective treatments for these symptoms.
• Healthcare professionals, caregivers, and patients need to focus on symptom management throughout the course of cancer.
• Two NCI-wide working groups are also addressing health-related quality-of-care research and palliative care issues.

Delivery

Disseminating Research Findings: Communication Tools and Resources

NCI has created several products that enable us to more accurately track cancer survivors and to communicate more effectively with diverse audiences:

• The Prevalence Statistics Website provides updated information about cancer survivors in the United States. The site will be expanded to track minorities and to provide information on survivors' second malignancies, quality of life, and prevalence data by state.
• The Facing Forward series for cancer survivors, family members, and medical professionals is designed to educate and empower cancer survivors as they face the challenges associated with life after cancer treatment.
• NCI is partnering with the American Cancer Society to distribute Life after Cancer Treatment, which provides information about and resources for managing recovery.
• A second volume, Ways You Can Make a Difference in Cancer, describes the benefits of and strategies for community action.
• NCI is partnering with over 50 local and national organizations to disseminate and evaluate these materials. The series will expand to include booklets for family members and healthcare providers.
• In partnership with Cancer Care, the Intercultural Cancer Council, the Lance Armstrong Foundation (LAF), and Living beyond Breast Cancer, NCI created a three-part teleconference series to provide survivors and their loved ones with a better understanding of what to expect after treatment ends. Over 1,500 participants, both nationwide and from 10 foreign countries, registered for the series.
• The NCI Cancer Survivorship Website is a comprehensive resource for researchers, advocates, cancer survivors, and the public. Features include current research grants, grant funding opportunities, and post-treatment resources.

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Objectives and Fiscal Year 2005 Milestones and Required Funding Increases

Discovery

Development

Development and Delivery

Discovery

Development

Development and Delivery

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Childhood Cancer Survivor Study Informs Intervention Development

The NCI-funded Childhood Cancer Survivor Study is a cohort of over 14,000 5-year survivors of childhood cancer - the largest and most extensively characterized group of childhood survivors in North America. This cohort is a unique resource for addressing issues faced by the ever-growing population of childhood survivors, including:

• Risk of second cancers
• Adverse endocrine, reproductive, and psychosocial outcomes
• Cardiopulmonary problems

A model of collaboration, the study is coordinated by researchers at the University of Minnesota and includes 27 participating centers in the United States and Canada.

Significant findings from the Childhood Cancer Survivor Study include the following:

• Many adult survivors of childhood cancer cannot recall basic aspects of their diagnosis and treatment, which could impair their ability to seek and receive long-term follow-up care.
• Childhood survivors are at increased risk for developing second cancers, but the degree of risk varies markedly by initial cancer diagnosis and treatment. Associated risk factors include an initial diagnosis of Hodgkin's disease or soft-tissue sarcoma, younger age at diagnosis, and certain types of chemotherapy.
• Survivors of childhood leukemia and lymphoma have a somewhat increased risk for depression compared to their siblings.
• Most chemotherapy treatments do not lead to pregnancy problems, but women who received radiation to the pelvis during childhood are more likely to have low birth weight babies.
• Radiation to the brain during childhood, especially at high dosages, is associated with an increased likelihood that survivors will need special-education services.
• Survivors of childhood leukemia and lymphoma who received high doses of radiation to the brain are at increased risk for obesity. This risk is highest for girls who were diagnosed and treated when younger than 5 years of age.
• When compared to the U.S. population, childhood survivors are less likely to smoke. If they do smoke, they are more likely to quit. Even so, the rate of smoking among study participants is far too high: 28 percent are smokers or former smokers.

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