DEVELOPING A CANCER SURVIVORSHIP RESEARCH AGENDA: CHALLENGES & OPPORTUNITIES
Patricia A. Ganz, MD
UCLA Schools of Medicine & Public Health
Jonsson Comprehensive Cancer Center
Survivorship Research Day
Dublin, September 19, 2013
“Three More Months” bySharon Gough RN and Paul Roseingrave CCA
Treatments are over, healing established. Physically easy, mentally challenging.
A fresh beginning; a new normal begins.Unusual aches and pains…same worries and
concerns.Blood work and scans along with doctor
appointments. Life continues with no evidence of disease.
Goal achieved for another three months.Oncology Times, Poetry by Cancer Caregivers, July 25, 2013; authors are also cancer survivors
Overview
The changing face of cancer: the challenge of an aging population
Limited resources for delivery of health care; increased fragmentation of care—how do we respond?
What are the research opportunities?
Where to start?
Pal & Hurria, JCO, 2010----US data
Aging & the Cancer Epidemic
From 2010-30, total cancer incidence will increase from 1.6 to 2.3 million
Increase is driven by the aging of the population (67% increase from older adults vs. 11% in younger adults)
A 99% increase is anticipated for minorities, compared with 33% for whites
Percentage of all cancers diagnosed in minorities will increase from 21% to 28%Smith et al, JCO, 2009
Who are the Cancer Survivors?
More than 1 in 3 Americans will be diagnosed with cancer in their lifetime
Almost 14 million Americans have a personal history of cancer; 4% of US population
More than 25 million people are survivors world wide
The number of cancer survivors will increase sharply during the next 25 yrs with aging of the population
18 Million U.S. Cancer Survivors Projected in 2022
U.S. Cancer Survivor Facts
60% of survivors are currently over the age 65 years.
Breast, Prostate, and Colorectal, are the 3 most prevalent cancer sites.
Approximately 14% of the 13.7 million estimated cancer survivors were diagnosed over 20 years ago.
The current average age of male and female cancer survivors is 69 and 64 respectively.
Trends in Five-year Relative Cancer Survival Rates (%), 1975-2008
Irish Cancer Statistics- courtesy A. O’Connor
30,000 new cases every year, with >40,000 expected in 2020
1in 3 men and 1 in 4 women (U.S. 1 in 2 men, 1 in 3 women)
5 yr cancer survival: 60% of men, 62% of women
280,000 people diagnosed between 1995-2009 have survived their cancer
Comparison of cancer survivors and age-matched individuals from the National Health Interview Survey (NHIS) in 2000
Multiple measures of burden embedded within the survey
JNCI 96:1322, 2004
Health Status is Significantly Poorer in Cancer Survivors
Excellent
VeryGood
Good
Fair
Poor
Excellent
VeryGood
Good
Fair
Poor
Yabroff, JNCI 2004
Cancer Survivors (N=1817) Noncancer Controls (N=5465)
P <.001
18% Fair & Poor31% Fair & Poor
Number of Comorbid ConditionsBurden of Illness is Greater
0
10
20
30
40
50
60
0 1 2 >= 3
Ca Surv
Noncancer
P<.001
%
Yabroff et al. JNCI 2004
Cancer survivorsN=1817
Noncancer controlsN=5465
Needs help with instrumental ADLs
11.4% 6.5%
P <.001
Any limitation in any way
36.2% 23.8%P <.001
Needs help with ADLs 4.9% 3.0%P=.003
Yabroff et al. JNCI 2004
Cancer Survivors Need More Help with Activities of Daily Living (ADLs)
Comorbid Conditions Causing Limitation in Cancer Survivors
Condition causing limitation, % CA Survivor Control P-value
Arthritis/rheumatism 21.9 18.4 .005
Back/neck problem 12.0 9.5 .01
Fracture/bone/joint injury 7.0 5.3 .03
Heart problem 5.8 4.8 .17
Stroke 2.1 1.8 .50
Hypertension 3.6 2.6 .02
Diabetes 2.6 2.3 .57
Lung/breath problem 4.8 3.6 .03
Depression/anxiety/emotional problem 2.5 1.9 .21
Weight problem 1.9 1.5 .34
Musculoskeletal problem 4.3 3.5 .18
Yabroff et al. JNCI 2004
Examining the Interaction of Age, Comorbidity, and Cancer
What is the impact of comorbid conditions on survival after cancer?
Cancer will soon be the Leading Cause of Death in the U.S.
Mean Age by Phase of Care forCancer and Comorbid Conditions
Yabroff, Med Care, 2007 using NHIS Data
R. Yancik, et al. JAMA, 2001
R. Yancik, et al. JAMA, 2001
Comorbid Conditions & Breast Ca
R. Yancik, et al. JAMA, 2001
HTN
Heart disease
R. Yancik, et al. JAMA, 2001
About half of all deaths are due to causes other than breast cancer!
Survivorship research….
A requirement for development of treatments to improve quality of life for cancer survivors
Necessary for prevention of late effects, through understanding of biological mechanisms and modification of cancer treatments
Need to attend to comorbid conditions as well
Opportunities…
Need for translational teams of researchers—move the observations from the clinic and population back to the lab—to understand biological mechanisms
Focus on primary, secondary and tertiary prevention of long-term and late effects
Assume each patient you treat will be a survivor—treat for cure AND treat for long-term survivorship!
Diagnosis and Staging
Diagnosis and Staging
Palliative Treatment
Palliative Treatment
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
ManagedChronic or Intermittent
Disease
ManagedChronic or Intermittent
Disease
Recurrence/Second Cancer
Recurrence/Second Cancer
Cancer Care Trajectory
DeathDeath
Treatment FailureTreatment Failure
Start Here
IOM, 2005
Survivorship Research & Survivorship Care
Why is cancer different from other chronic diseases?
Cancer treatment is…. Complex Multi-modal Multi-disciplinary Toxic Expensive And often poorly coordinated
Cancer treatment usually occurs in isolation from primary health care delivery
Other Challenges
Limited systematic study of the late effects of cancer therapy
Follow-up care plans have been ad hoc, with focus on surveillance for recurrence
When should health promotion and chronic disease prevention become the focus?
Infertility? “Dear, you should just be happy to be alive.”
Survivorship Health Care Delivery: A need for systematic research
The Three P’s of Survivor Care Palliation Prevention Health Promotion
Ganz, P A. (2011). The 'three Ps' of cancer survivorship care. BMC medicine, 9, 14-14.
Symptom Management/Palliative Care:An Integral Part of Survivorship Care Definition of Palliative Care:
Medical care or treatment that concentrates on reducing the severity of disease symptoms (particularly if there is not a curative medical treatment)
Goal is to prevent and relieve suffering and to improve QOL for people facing complex illness
Focus on the most severe and prolonged symptoms
Common Palliative Care Concerns
Pain Fatigue Depression Physical limitations Cognitive changes Lymphedema Sexual dysfunction Menopause related symptoms Body Image
Why is it important to understand biological mechanisms of symptoms? Identification of underlying biology
provides support/validity for complaints Leads to possible interventions
(pharmacological or behavioral) Potential for prevention, if at-risk
individuals identified Possible relationship to tumor biology and
progression
Antoni et al. Nature Reviews Cancer 6, 240–248 (March 2006) | doi:10.1038/nrc1820
A Biobehavioral Model of Cancer
Prevention
Systematic ongoing follow-up required for screening Goal: early detection and early intervention
for potentially serious late-onset complications e.g., cataracts, osteoporosis, cardiac disease
Chemoprevention when available Life style modification to prevent second
cancers
Health Promotion
Health promotion counseling Goal: promote risk reduction for health
problems that commonly present during adulthood ( esp. for childhood cancer survivors)
Avoid weight gain Increase physical activity Avoidance of exposures that are harmful Decrease risk of other chronic diseases,
e.g. diabetes, heart disease
How to deliver the 3 P’s?
New research is needed on models of care delivery
One size will not fit all; different settings and different patients will have different requirements
What is right for Ireland may not be right in other settings
Diagnosis and Staging
Diagnosis and Staging
Palliative Treatment
Palliative Treatment
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
ManagedChronic or Intermittent
Disease
ManagedChronic or Intermittent
Disease
Recurrence/Second Cancer
Recurrence/Second Cancer
Research Focused on the Late Effects of Cancer Treatment
DeathDeath
Treatment FailureTreatment Failure
Descriptive studies; what happens after cancer treatments
Start Here
IOM, 2005
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
InfertilityInfertility
Cancer Care Trajectory
Start Here
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
Infertility Infertility
Cancer Care Trajectory
Start Here
Fertility preservationFertility preservation
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
Infertility Infertility
Cancer Care Trajectory
Start Here
Fertility preservationFertility preservation
Treatment changeTreatment change
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
Infertility Infertility
Cancer Care Trajectory
Start Here
Fertility preservationFertility preservation
Treatment changeTreatment change Infertility “Treatment”Infertility “Treatment”
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
ManagedChronic or Intermittent
Disease
ManagedChronic or Intermittent
Disease
Recurrence/Second Cancer
Recurrence/Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosisRisk assessment and intervention at diagnosis
Safer or more targeted therapies
Safer or more targeted therapies
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
Medical Outcomesand Quality of Life Medical Outcomesand Quality of Life
Recurrence/Second Cancer
Recurrence/Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosisRisk assessment and intervention at diagnosis
Safer therapies
Safer therapies
Diagnosis and Staging
Diagnosis and Staging
Treatment With Intent to CureTreatment With Intent to Cure
Cancer-FreeSurvival
Cancer-FreeSurvival
Medical Outcomesand Quality of Life Medical Outcomesand Quality of Life
Recurrence/Second Cancer
Recurrence/Second Cancer
Cancer Care Trajectory
Start Here
Risk assessment and intervention at diagnosisRisk assessment and intervention at diagnosis
Safer therapiesSafer therapies Survivor health care delivery: Palliation, Prevention and Health Promotion
Where to start?
What populations do you have access to?
What is the setting of care? What existing expertise can be
applied to the cancer survivorship research agenda?
Potential Strategies
Develop transdisciplinary teams focused on common symptoms or chronic conditions
Engage social and behavioral scientists Work closely with researchers who work
with the aging population Work with your health system and
examine new models of care delivery Study diseases other than breast cancer!!
T1
T2
T3T4
T0
Survivorship Research & The Translational Science Process
Modified from Khoury MJ et al; Am J Epidemiol 2010; 172:517-524
PopulationHealth; Disease
Burden; Public health impact (Surveillance
indicators)
Scientific Discovery (preclinical,
epidemiologymechanism studies)
Evidence basedRecommendations
& policies (Guidelines)
Tests of promising Interventions (Phase I, II, &
III trials)
Implementation into Practice,
Organizations, &Communities
Knowledge
Integration
(Managemen
t, Synthesis and Stakeholder
Engagement)