Championing Research in Cancer Survivorship

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Championing Research in Cancer Survivorship!

• Office of Cancer Survivorship
• Julia H. Rowland, Ph.D., Director
• National Cancer Institute National Institutes
  of Health DHHS

Listening and Learning Together Building a
Bridge of Trust, DCLG Summit, Bethesda, MD, June
20, 2006
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The Dream of Yesterday
National Cancer Act of 1971
President Richard Nixon signs National Cancer Act
on December 23, 1971
Make the Conquest of Cancer a National Crusade
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Estimated Number Cancer Survivors in the United
States from 1971 to 2003
Data source 2005 Submission. U.S. Estimated
Prevalence counts were estimated by applying U.S.
populations to SEER 9 and historical Connecticut
Limited Duration Prevalence proportions and
adjusted to represent complete prevalence.
Populations from January 2003 were based on the
average of the July 2002 and July 2003
population estimates from the U.S. Bureau of
Census.
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What has contributed to this remarkable progress?

• Earlier detection
• New and more effective therapies, often including
  multimodal and multi-agent combinations
• More effective adjuvant and/or maintenance
  therapies
• Better supportive care
• Growing attention to long-term surveillance

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Who Are Our Survivors?
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Number of Cancer Survivors

• It is currently estimated that there are 10.5
  million cancer survivors in the United States
• Cancer survivors represent approximately 3.6 of
  the population.

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Estimated Number of Persons Alive in the
U.S.Diagnosed With Cancer by Site (N 10.5 M)
Data source 2005 Submission. U.S. Estimated
Prevalence counts were estimated by applying U.S.
populations to SEER 9 and historical Connecticut
Limited Duration Prevalence proportions and
adjusted to represent complete prevalence.
Populations from January 2003 were based on the
average of the July 2002 and July 2003
population estimates from the U.S. Bureau of
Census.
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Estimated Number of Persons Alive in the U.S.
Diagnosed with Cancer on January 1, 2003 by Time
From Diagnosis and Gender (Invasive/1st Primary
Cases Only, N 10.5M survivors)
Data source 2005 Submission. U.S. Estimated
Prevalence counts were estimated by applying U.S.
populations to SEER 9 and historical Connecticut
Limited Duration Prevalence proportions and
adjusted to represent complete prevalence.
Populations from January 2003 were based on the
average of the July 2002 and July 2003 population
estimates from the U.S. Bureau of Census.
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Estimated Number of Persons Alive in the U.S.
Diagnosed With Cancer by Current Age

(Invasive/1st Primary Cases Only, N10.5M
survivors)
Data source 2005 Submission. U.S. Estimated
Prevalence counts were estimated by applying U.S.
populations to SEER 9 and historical Connecticut
Limited Duration Prevalence proportions and
adjusted to represent complete prevalence.
Populations from January 2003 were based on the
average of the July 2002 and July 2003 population
estimates from the U.S. Bureau of Census.
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Female Breast Cancer Survival by Race/Ethnicity
Adjusted by Age and Stage at Diagnosis
SEER 1992 - 2000
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6
4
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The Changing Demography of Cancer Survivorship

• The majority of those diagnosed today can expect
  to be alive in 5 years (66)
• Over 80 of all cancer patients are treated in
  the community
• Cancer for many has become a chronic illness
• Cancer affects the entire family, and often a
  community

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OCS Goals

• The ultimate goal of the OCS is to enhance the
  length and quality of survival of all cancer
  survivors
• To provide a focus for the support of research
  that will lead to a clearer understanding of, and
  the ultimate prevention of, or reduction in,
  adverse physical, psychosocial, and economic
  outcomes associated with cancer and its
  treatment.
• To educate professionals who deal with cancer
  survivors about issues and practices critical to
  the optimal well-being of their patients. This
  educational commitment extends to cancer
  survivors and their families.

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Definitional Issue Who is a Cancer Survivor?

• Philosophically, anyone who has been diagnosed
  with cancer is a survivor from the time of
  diagnosis and for the balance of life (NCCS)
• Caregivers and family members are also cancer
  survivors

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Whats in a name?

• Patients
• Victims
• Survivors
• Thrivers
• Victors

• Rookies/Veterans
• Activists
• Advocates
• Warriors
• The Blessed

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Definitional Issue What is Cancer Survivorship
Research?

• Cancer Survivorship Research seeks to
• Identify, examine, prevent, and control adverse
  cancer- and treatment-related outcomes (such as
  pain, lymphedema, sexual dysfunction, second
  cancers, poor quality of life)
• Provide a knowledge base regarding optimal
  follow-up care and surveillance of cancer
  survivors, and
• Optimize health after cancer treatment.

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Survivorship Grant Portfolio
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NIH Survivorship Research Grants in FY05 by
Institute (N 236)
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NIH Survivorship Research Grants in FY05 by Study
Design (N 236)
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NIH Grants by Late/Long-Term Effect in FY05 (N
236) (Grants may have more than 1 focus)
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NIH Survivorship Research Grants FY05 by Survivor
Population Studied (Grants may have more than 1
focus)
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What is the Research Telling Us?
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Lessons Learned From Clinical-Descriptive
Research

• The majority of individuals successfully treated
  for cancer report adequate to good health-related
  quality of life following treatment Resilience!
• But
• Being disease free, does NOT mean you are free of
  your disease.
• Cancer can affect all aspects of a persons life.

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Chronic and Late Effects of Cancer Treatment

• Physical/Medical (e.g., second cancers, cardiac
  dysfunction, pain, lymphedema, sexual
  reproductive impairment)
• Psychological (e.g., depression, anxiety,
  uncertainty, isolation, altered body image)
• Social (e.g., changes in interpersonal
  relationships, concerns regarding health or life
  insurance, job lock/loss, return to school,
  financial burden)
• Existential and Spiritual Issues (e.g., sense of
  purpose or meaning, appreciation of life)

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What are Survivors Also Telling Us?

• They want to know how to reduce the morbidity and
  mortality associated with their illness.
• They are also worried about the health of their
  family members.
• They want to work with their healthcare providers
  to address these issues, but are frustrated that
  these individuals often have little to offer them
  in this regard.
• The diagnosis of cancer may for many present a
  teachable moment.

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Cancer Survivors Interest in Health Related
Programs
Demark-Wahnefried et al. Cancer 88 674-684, 2000
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Physical activity - What role in cancer
treatment and recovery?

• Physical activity/exercise programs during
  treatment can reduce fatigue and nausea, promote
  functional capacity, improve mood, decrease
  distress, and control weight gain.
• Exercise participation after treatment can
  improve, self-esteem, physical functioning, and
  global quality of life.
• Can it alter other health risks (e.g., cancer
  recurrence, cardiovascular disease, osteoporosis)
  ?
• (For reviews see Pinto Muruyama,
  Psycho-Oncology 1999
• Courneya Friedenreich Annals Behav Med 1999,
  2001 Survival benefit Holmes et al., JAMA,
  2005)

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What Does the Future Hold?
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Implications for Future Directions in
Survivorship Research

• Exploration of . . .
• Emerging late effects among adults (e.g.,
  cardiac, neuro-cognitive, reproductive, 2nd
  cancers, neuropathy)
• The role of psychosocial/behavioral interventions
  in reducing adverse outcomes promoting health
• Economic outcomes, patterns of care, service
  delivery
• Impact of survivorship on the family/caregiver
• Outcomes among under-researched under-served
  groups (by cancer site, age, ethno-cultural
  background, and geography)

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Implications for Future Directions in Clinical
Care -1

• Attention to developmental/life-span issues in
  treatment decision-making and care
• Emphasizing good communication
• Monitoring and promoting well-being across the
  survivorship trajectory
• Addressing the needs of family/caregivers

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Implications for Future Directions in Clinical
Care -2

• Developing guidelines for long-term follow-up
  (evaluating late toxicities)
• Leveraging models and delivery systems used for
  care in the setting of chronic illness
  (especially telemedicine self-management
  internet professional, non-profit organizations,
  peer counseling)
• Listening to survivors!

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Challenges for the Future

• Keeping up with our expanding population of
  cancer survivors
• Identifying emerging survivorship issues and ways
  to track and address these
• Ensuring that all segments of our society are
  covered by our cancer registries, research, and
  care
• Leveraging new technologies and delivery models
  to capitalize on our reach and efficiency
• Training the next generation of professionals
  invested in supporting and promoting nationally,
  high quality cancer surveillance and control
• Doing all of the above without overwhelming the
  cancer surveillance, research and delivery system
  physically or financially !

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Opportunities Visibility of Survivorship Issues
at the National Level!

• Initiation of efforts by CDC to include
  survivorship areas/goals in state cancer control
  plans (2001)
• Focus on Cancer Survivorship among Childhood
  (2003) and Adult Survivors (2005) by the
  Institute of Medicine
• Cancer Survivorship selected as the theme for FY
  2003/4 Presidents Cancer Panel
• Publication (2004) of a National Action Plan by
  CDC and Lance Armstrong Foundation
• Demand by U.S. Congress (Senate) for aggressive
  expansion of the Office of Cancer Survivorship
  and introduction of several bills (in both the
  House and Senate) that address care of cancer
  survivors

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Opportunities

• To use forums such as this one to share with
  cancer survivors and their advocates information
  about NCI supported research and what it is (and
  is not) telling us.
• To use this forum in particular to foster a
  dialogue between the scientific and advocacy
  communities to ensure our investment in
  survivorship research both addresses the needs of
  and reaches those who most stand to benefit.
• To potentially change the face of cancer
  survivorship for survivors today, and those who
  will be diagnosed in the future.

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Changing the Culture of Research and Care
The PATIENT is as important as the TUMOR
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Natalie Davis Spingarn

• The new population of survivors hanging in there
  can be found everywherein offices and factories,
  on bicycles and cruise ships, on tennis courts
  and beaches, and in bowling alleys. You see them
  in all ages, shapes, sizes, and colors, usually
  unremarkable in their appearance, sometimes
  remarkable for the way they learn to live with
  disabilities.
• Source The New Cancer Survivors. Living
• with Grace, Fighting with Spirit
• Johns Hopkins University Press, 1999