Cancer Survivorship Research & Funding at NIHdepts.washington.edu/bcpt/docs/2013-3-26 FHCRC survivorship talk_… · 26/03/2013 · Estimations and modeling provided by Angela Mariotto,

Cancer Survivorship Research

& Funding at NIH

Catherine Alfano Deputy Director, Office of Cancer Survivorship,

National Cancer Institute

FHCRC

March 26, 2013

The Dream of Yesterday National Cancer Act of 1971

“Make the Conquest of Cancer a National Crusade”

President Richard Nixon signs National Cancer Act on December 23, 1971

Visibility of Cancer Survivorship at the

International Level

Definitional Issue: Who is a Cancer Survivor?

(NCCS, 1986)

• Philosophically, anyone who has been diagnosed with cancer is a survivor— from the time of diagnosis and for the balance of life

• Differentiate types of survivors:

• Active treatment

• Disease-free long-term survivors (≥5 yrs post-dx);

• Those living with CA as a chronic disease

Drivers of Survivorship Research

• Earlier detection & better treatment ↑ survival

– Adults: 5-year survival 67%

– Children: 10-year survival > 75%

• Cancer for many has become a chronic illness

• Cancer is a family illness

– Effects extend to workplace, society

• ↑# survivors = ↑ attention to chronic, late effects

of cancer/treatment

– Physical, psychological, social, economic, existential

Chronic Effects of Cancer Treatment

Physical, Psychosocial, & Economic:

• Fatigue

• Pain, neuropathy

• Cognition problems

• Lymphedema

• Sexual impairment

• Incontinence

• Depression & anxiety

• Uncertainty

• Altered body image

• Relationship changes

• Health/life insurance problems

• Concerns re: Job lock/loss,

financial burden

…And some positive changes: sense of purpose or meaning,

appreciation of life

Cancer Survivors at

Risk for Late Effects

• Disease recurrence/ new cancers

(>756K multiple CA; 16% of new diagnoses)*

• Cardiovascular disease

• Endocrine dysregulation

• Obesity

• Diabetes

• Osteoporosis

• Upper/lower quadrant mobility & functional limitations

• Functional decline disability

* Mariotto et al., CEBP 2007

Oeffinger et al, N Engl J Med, 2006

0

0.1

0.2

0.3

0.4

0.5

0.6

0.7

0.8

0.9

1.0

0 5 10 15 20 25 30

Yrs. From Original Cancer Diagnosis

Cu

mu

lative

In

cid

en

ce Grade 1-5

Grade 3-5

Incidence of Chronic Health Conditions in 10,397

Adult Survivors of Childhood Cancer

Mean age of 26.6 years (18-48 years)

By 30 years post cancer:

• 73% survivors with at least one

chronic health condition

• 42% with a Grade 3-5 (severe,

life-threatening, death)

• 39% had >2 chronic health

conditions

Survivors – 8.2 times more likely to

have a severe or life threatening

condition compared to siblings

Childhood Cancer Survivor Study

% with Limitations:

Survivors vs. General Population

0

10

20

30

40

50

60

General

Survivors

Hewitt, Rowland, Yancik. J Gerontol. 58:82, 2003

Psych

Problems

1+

ADL/IADL

1+

Functional

Work

“[Survivors] have special psychological, physical, and health care counseling needs

that we are only beginning to understand…the [OCS] will support the much needed

research that will help cancer survivors deal with the problems they face even after

their cancer is cured.” President Clinton, October 27, 1996, at the Rose Garden

ceremony to formally announce the launch of the OCS.

Office of Cancer Survivorship 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.

Men Women Both sexes

World 13514 15288 28802

More developed regions 7756 7505 15261

Less developed regions 5758 7782 13540

WHO Africa region (AFRO) 431 725 1156

WHO Americas region (PAHO) 3345 3496 6841

WHO East Mediterranean region (EMRO) 381 526 907

WHO Europe region (EURO) 4378 4516 8894

WHO South-East Asia region (SEARO) 1123 2020 3143

WHO Western Pacific region (WPRO) 3852 3998 7850

IARC membership (22 countries) 7799 7933 15732

United States of America 2137 2059 4196

China 2187 2416 4603

India 620 1084 1704

European Union (EU-27) 3404 3213 6617

Estimated Prevalence in 2008 (thousands)

Estimations and modeling provided by Angela Mariotto, PhD, based on: Mariotto AB, Yabroff KR, Shao Y, Feuer EJ, Brown ML.

Projections of the cost of cancer care in the United States: 2010-2020. J Natl Cancer Inst. 2011 Jan 19;103(2):117-28. Epub 2011 Jan 12.

Estimated Number of Cancer Survivors in the

United States From 1975 to 2012

0

2,000,000

4,000,000

6,000,000

8,000,000

10,000,000

12,000,000

14,000,000

16,000,000

Nu

mb

er

Year

13.7M

Estimated Number of Persons Alive in the U.S. Who Were Diagnosed With Cancer, by Site (N = 13.7 M) (as of January 1, 2012)

Female Breast 22%

Prostate 20%

Colorectal 9% Gynecologic

(cervix, corpus uterus, ovary)

8%

Hematologic (Hodgkin, Non-

Hodgkin, Leukemia) 8%

Urinary Bladder, Kidney,

Renal Pelvis 7%

Melanoma 7%

Thyroid 4%

Lung 3%

Other 13%



-

500,000

1,000,000

1,500,000

2,000,000

2,500,000

<1 1-<5 5-<10 10-<15 15-<20 20-<25 25+

Nu

mb

er

Years from Diagnosis

Males

Females

Estimated number of cancer survivors in the United States as of

January 1, 2012 by time since diagnosis and sex source: de Moor et al, CEBP, in press March 2013

Estimated Number of Persons Alive in the U.S. Who Were Diagnosed

With Cancer, by Current Age (as of January 1, 2012) (Invasive/1st Primary Cases Only, N = 13.7 M survivors)

0-19 Years 1%

20-29 Years 1%

30-39 Years 3%

40-49 Years 7%

50-59 Years 17%

60-69 Years 26%

70-79 Years 25%

80+ Years 20%



FY 13 Funding Priorities in

Cancer Survivorship

• Understanding the Chronic & Late Effects

of Cancer/Treatment

• Cancer & Aging

• Translation of Survivorship Science into

Care

• Interventions & Models of Care to Improve

Post-Treatment Health, QOL, &

Functioning


Cancer Survivorship


of Cancer/Treatment

• Cancer & Aging


Care



Functioning

Grants Targeting Late Effects:

FY 2007 & 2010 (Grants may have more than 1 focus)

0 20 40 60 80 100 120

Psychological Distress

Fatigue or sleep

Pain

Sexual Function

Neurocognitive Function

Recurrence

Cardiac Toxicity

Weight/Obesity

Lymphedema

Endocrine Function

Reproductive Factors

Menopausal Symptoms

Second Cancers

Bone Density

FY2007

FY2010

Chronic & Late Effects Priorities

• Cohort! PAR-11-167

PAR-11-167: Cohorts with n=10,000 Expires 11/9/13



• Leverage large extant databases to ask

novel Qs:

– SEER-Medicare, SEER-MHOS, MEPS, NHIS,

CCSS

Link to surveys: appliedresearch.cancer.gov



• Leverage large extant databases to ask

novel Qs:

– SEER-Medicare, SEER-MHOS, MEPS, NHIS,

CCSS

• Working to include common data elements

in clinical trials to monitor survivorship

outcomes

– Socio-demographics, comorbidity, PA,

smoking, depression, social isolation, QOL

Focus on Cardio-toxicity


Cancer Survivorship


of Cancer/Treatment

• Cancer & Aging


Care



Functioning

Projected Increase in US Cancer

Survivors by 2020

Cancer Epidemiol Biomarkers Prev; 20(10) October 2011

0

2,000,000

4,000,000

6,000,000

8,000,000

10,000,000

12,000,000

14,000,000

16,000,000

18,000,000

20,000,000

2010 2011 2012 2013 2014 2015 2016 2017 2018 2019 2020

Nu

mb

er

of

cases

Year

65+

<65

47% ↑

Baby Boomers and Expectations

What a Difference a Generation Makes

THEN COMING SOON…

Aging & Cancer Priorities

• Older adult survivors

– Needs

– Interventions

FY 2010 NIH Survivorship Research Grants by

Survivor Population Studied (N=273; Grants may have

more than 1 focus)

0 10 20 30 40 50 60

Spanish-Speaking

Rural Survivors

Family Members/Caregivers

Health Disparity Populations

Cancer Survivors >5 Yrs Post-Dx

Older Adult (>65 Yrs Dx)

Young Adult (20-45 Yrs Dx)

Adolescent Survivors (14-19 Yrs Dx)

Pediatric Survivors (<19 Yrs Dx)

9

5

42

33

55

30

28

25

46

Aging Survivors- We are NOT ready!

• Many unanswered questions:

– Efficacy of cancer treatments?

– Terrain of recovery?

– Who is in need of what intervention when?

– Who will manage complicated care for

survivors with multiple comorbidities?

– How & at what cost?

– How can we avoid overwhelming the

healthcare system?

• Given PCP, ONC, & NSG shortages?



– Needs

– Interventions

• Understanding the Mechanisms driving

“accelerated aging” in survivors using

systems science

Cancer & Cancer Treatment

Pathophysiological Processes

Comorbid Conditions

Cognitive/Functional Decline

Organ System Failure

Death

Pathophysiological Processes

Comorbid Conditions

Cognitive/Functional Decline


Death

Cancer

Survivor

“Healthy”

Adult

Time

Hypothesized Aging Trajectories A

ge

Underlying Intracellular

Processes

•Oxidative Stress (ROS, DNA damage)

•Genomic Stability (Telomere, telomerase, sirtuins)

Pathophysiologic Processes

•Endocrine dysregulation (insulin, leptin, adiponectin, glucose metabolism)

•Impaired cardiorespiratory fitness

•Inflammation

•Circadian disruption

•Change in vasculature

•Nerve/tissue damage

•Change in bone turnover markers

•Estrogen deficiency

•Cardiac Tissue damage

•Fatigue

•Functional decline

Comorbid Conditions

• Depression

•Anxiety

•Sleep disorders

•Neuropathy

•Lymphedema

•Cardiovascular Disease

•Chronic Pain

•Osteoporosis

•Obesity

•Diabetes

•Cognitive Impairment

•Functional Impairment

•Premature menopause

• Chronic Arthralgias

Cognitive/

Functional Demise


Death

Spirituality Health Behaviors

Productivity Financial Resources

Social Factors

Personal Control/

Self-Management

Life Satisfaction

Stress

“Healthy” Adult Rate of Acceleration

Healthcare System Factors

Cancer Survivor Rate of Acceleration

Cancer & Cancer Treatment

Obesity Ex: Embrace Complexity!



– Needs

– Interventions

• Understanding the Mechanisms driving

“accelerated aging” in survivors using

systems science

• DHHS interest in Multiple Chronic

Conditions

– Feb 13 workshop to develop research agenda

– Interest in self-management of health after CA

HHS Initiative Highlights Need for Self-Management


Cancer Survivorship


of Cancer/Treatment

• Cancer & Aging


Care



Functioning

Translational Science Priorities

• Biennial 2012 meeting mapping

translational science onto survivorship

T3

T1

T2

T4

T0 Technology

Knowledge Integration

Multi-level Analysis

Collaboration (Researchers,

Survivors, Stakeholders)

The Translational Science Process for Survivorship

Modified from Lam et al; CEBP 2013; (22); 181-8

Survivor Population Health &

Disease Burden

Scientific Discovery

Promising Applications & Interventions

Evidence Based Recommendations ,

Guidelines or Policies

Programs in Practice, Organization, &

Community Settings

Describe Health Outcomes & Determinants

Mechanisms; Preclinical Studies; Phase I & II trials

Efficacy (Phase III Trials)

Implementation & Dissemination

Effectiveness in Populations




• Stimulate research along the T0-T4

process

– Targeted funding announcements

– Portfolio Analysis by T0-T4

Stimulating Translational Survivorship

Research; e.g, PAR 12-228 & PAR 12-229




• Stimulate research along the T0-T4

process

– Targeted funding announcements

– Portfolio Analysis by T0-T4

• Collaboration with NCI Implementation

Science group

Dissemination & Implementation

Research PAR-13-054; 13-055; 13-056


Cancer Survivorship


of Cancer/Treatment

• Cancer & Aging


Care



Functioning

Interventions &

Models of Care Priorities

• Test models of survivorship care planning:

PA 12-274 & PA 12-275

Selected Recommendations from the

President’s Cancer Panel & IOM Reports

• When treatment ends, all survivors

should receive a summary record that

includes important disease

characteristics and treatments received.

• In addition, they should be provided with

a follow-up care plan incorporating

available evidence-based standards of

care.

Care Planning

• ASCO, ACOS CoC recommendations, &

LiveSTRONG Essential Elements meeting call

for implementation of care planning

• 2 scientific meetings and IOM report call for

evaluation of care planning

• Lack of evidence base for implementation and

evaluation

• Comparative approaches needed to evaluate

impact of care planning on patient, provider,

payor, and systems factors & evaluate best

practices for implementation

Test models of survivorship care

planning: PA 12-274 & PA 12-275

Purpose: stimulate research to evaluate the effect of care planning on cancer

survivors' health and psychosocial outcomes; self-management of late

effects and adherence to cancer screening and health behavior guidelines;

utilization of follow-up care; organizational-level factors influencing the

implementation of care planning; and associated costs

Interventions &



PA 12-274 & PA 12-275

• Integrate cancer rehabilitation into

survivorship care

0

2

4

6

8

10

12

14

16

18

20

1977 1982 1987 1992 1997 2002 2007 2012 2017 2022

Nu

mb

er i

n M

illi

on

s

Year

15+ years

10-<15 years

5-<10 years

1-<5 years

<1

Estimated and projected number of cancer survivors in the

United States from 1977-2022 by years since diagnosis Source: de Moor et al, CEBP, in press March 2013

Time for a new model of

survivorship care

• Dramatic ↑ in # survivors

– Especially in older adults

• Multiple comorbidities

– Many will die of comorbid conditions

• Chronic effects of tx; At risk for late effects

– physical & emotional issues not being met

• Need to prevent spiral into disability

• Need to promote healthy behaviors

• Shortage of providers

Why a comprehensive rehab model?

Joint focus on optimizing functional status & QOL

Address pre-existing or tx-related comorbidities

Reduce risk of death from comorbid conditions

Treat chronic effects of tx; Reduce risk for late

effects

Evaluates sum total problems & coordinates tx

Promotion of self-management and healthy

behaviors prevents further problems; ↓risk of

recurrence

Prevents spiral into disability; preserve work, roles

Interventions &



PA 12-274 & PA 12-275


survivorship care

• Address barriers to adoption of evidence-

based findings into care

Research Evidence Care

• Takes a coordinated approach: having

enough of the right kind of evidence…

• Need value added & “costs” at multiple

levels (survivor, family, provider, healthcare system)

– September meeting will explore how to create

research synergies between behavioral

interventionists and health services/health

economics researchers

• Implementation Science collaboration

Interventions &



PA 12-274 & PA 12-275


survivorship care

• Address barriers to adoption of evidence-

based findings into care

• Improve adherence to survivorship care

recommendations & interventions

Adherence to Care & Interventions

• NIH-wide adherence network: Need to study

adherence using a multi-level lens:

– Provider adherence to guidelines/care standards

– Survivor adherence to

• cancer treatment; surveillance; healthy behavior recs, follow-

up care, other interventions

– Study personnel adherence to study protocol

– Family, clinic, or organization-level adherence

• Need to make care goals “person-centered”

– Identification of care goals should be a collaborative

process (survivor, provider, family)

Thanks!.. Contact: [email protected]

Documents

Cancer Survivorship Research & Funding at NIHdepts.washington.edu/bcpt/docs/2013-3-26 FHCRC survivorship talk_… · 26/03/2013 · Estimations and modeling provided by Angela Mariotto,