Transcript
Page 1: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Cancer Survivorship & Cancer

Rehabilitation:

Building a New Integrated Model of

Survivorship Care in the United States

Catherine M. Alfano, Ph.D. Deputy Director

Office of Cancer Survivorship, DCCPS

National Cancer Institute

European Cancer Rehabilitation & Survivorship Symposium

September 17, 2012

Copenhagen, Denmark

Page 2: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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

Page 3: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Changing Demography of Cancer

Survivorship in the US

• 65% of adults Dx’d today will be alive 5+ years;

Children: 10 year relative survival rate > 75%

• Cancer for many has become a chronic illness

– Implications for care; economic impact ($125 billion in

2010 (Yabroff et al, 2011; CEBP 20: 2006-2014)

• Cancer is for most, a family illness

– Effects extend to workplace, society

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

of cancer/treatment

– Physical, psychological, social, economic, existential

Page 4: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

“[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.

Page 5: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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.

Page 6: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Estimated Number of Cancer Survivors in

the United States From 1971 to 2008

Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto

A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008,

National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2007/, based on November 2010 SEER data submission, posted

to the SEER web site, 2011.

13.7M

Page 7: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer on January 1, 2008 by Site (N = 11.9 M)

Female Breast22%

Prostate20%

Colorectal9%

Gynecologic8%

Hematologic (HD,NHL,Leukemia,

ALL, Myeloma)8%

Urinary Tract (Bladder, Kidney,

Renal Pelvis)7%

Melanoma7%

Thyroid4%

Lung3%

Other12%

Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto

A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008,

National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted

to the SEER web site, 2011.

Page 8: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto

A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008,

National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted

to the SEER web site, 2011.

.

Estimated Number of Persons Alive in the U.S. Diagnosed with

Cancer on January 1, 2008 by Time From Diagnosis and Gender (Invasive/1st Primary Cases Only, N = 11.9 M survivors)

Page 9: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Estimated Number of Persons Alive in the U.S. Diagnosed with Cancer

on January 1, 2008 by Current Age (Invasive/1st Primary Cases Only, N = 11.9 M survivors)

0-19 Years 1%

20-29 Years 1%

30-39 Years 3%

40-49 Years 8%

50-59 Years 16%

60-69 Years 24%

70-79 Years 25%

80+ Years 22%

Data source: Altekruse SF, Kosary CL, Krapcho M, Neyman N, Aminou R, Waldron W, Ruhl J, Howlader N, Tatalovich Z, Cho H, Mariotto

A, Eisner MP, Lewis DR, Cronin K, Chen HS, Feuer EJ, Stinchcomb DG, Edwards BK (eds). SEER Cancer Statistics Review, 1975-2008,

National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2008/, based on November 2010 SEER data submission, posted

to the SEER web site, 2011.

Page 10: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Projected Increase in US Cancer

Survivors by 2020

Parry et al, CEBP; 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

42% ↑

Page 11: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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

Page 12: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Cancer Survivors at Increased

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

Page 13: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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

Page 14: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

% 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

Page 15: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Many survivors will die of competing

causes, NOT cancer…

• Older breast cancer survivors: more likely to die

of CVD than breast cancer (Patnaik, Breast Cancer Research 2011,

13(3):R64)

• 15-year prostate cancer-specific mortality: 5.3%

vs. 30.6% non CaP-mortality (Shikanov, Prostate Cancer Prostatic Dis.

2012 Mar;15(1):106-10)

• Testicular CA survivors treated w/ XRT under

age 35: 1.7 x more likely to die of circulatory Dz

than general population (Fossa, JNCI 2007 April 4; 99(7), 533-44)

Page 16: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Current Thinking in the US about a

“New” Model of Care is PCP v ONC

Oeffinger & McCabe, JCO 24(22), 2006

Page 17: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

2011 US Meeting on Survivorship Care

Planning; Risk-Stratification

Oncology

Primary Care

Late Effects (severity)

Patient-reported outcomes--physical, psychological, functional, social work (must be determined using screening/assessment tool)

Low/low

High/high

Wel

l-b

ein

g

Outside resources

Ris

k o

f re

curr

ence

Page 18: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Projected supply of and demand for

oncology providers

Erikson et al. (2007), Journal of Oncology Practice

Page 19: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Moving forward to a new model of post-

treatment survivorship care

Page 20: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

IOM components of survivorship care

• Surveillance

– Recurrence, 2nd CAs, late effects

• Intervention for treatment consequences

– Medical/psychosocial/economic chronic & late

effects

• Prevention of recurrence/new CAs, late

effects

• Coordination between PCP and specialists

to ensure all needs are met

Page 21: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Recommendations from the President’s

Cancer Panel & IOM Reports

• When treatment ends, all survivors

should receive

• a summary record that includes info re:

disease, treatments & complications.

• a follow-up care plan incorporating available

evidence-based standards of care

describing who to see for what & when.

• ACS CoC accreditation mandate for

2015

Page 22: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

HOW DO WE TREAT ALL OF OUR

SURVIVORS & MEET ALL OF

THEIR NEEDS?

But equally importantly…

Page 23: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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

Page 24: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Finding a new model

Page 25: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Why a comprehensive rehab model?

Joint focus on optimizing functional status & QOL

Intervention:

Address pre-existing or tx-related comorbidities

Treat chronic effects of tx

Prevention: Promotion of self-management and healthy

behaviors prevents further problems;

↓risk of recurrence & ↓ death due to comorbidities

↓risk for late effects

Coordination: Evaluates sum total problems/needs &

coordinates care

Prevents spiral into disability; preserve work, roles

Add in surveillance to embody 4 pillars of IOM defined SC

Page 26: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Comprehensive Cancer Rehabilitation

• Need to change “traditional” beliefs:

– Rehabilitation only for survivors needing

“complex care”

– Rehabilitation is PT only or exercise only

– Rehabilitation is a consult service

• Turn on its head: Lens not a Service

• Unification: Survivorship care =

Rehabilitation care

Page 27: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Pressing Questions

• How do we build an evidence base for the best model of

post-tx survivorship care?

• Need international collaboration to build/evaluate models that

might serve as “best practices”

• Show improvements in patient, health care system, and cost

outcomes?

• Risk stratification into care? Referral back to primary

care?

• Types of care? How to deliver care?

• How to keep up with changing needs as tx changes?

• How can we train enough providers?

• Who will pay for this?

• US cancer costs: $125 billion in 2010 (Yabroff et al, 2011; CEBP 20: 2006-

2014)

Page 28: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

• UK risk-stratification into 3 pathways of

care: (2 million survivors)

http://www.ncsi.org.uk/what-we-are-doing/risk-stratified-pathways-of-care/

Page 29: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Barriers to a new model in the US

• Divergent perceptions about who should

provide care for survivors Potosky et al, JGIM 2011

• Need training for knowledge gaps; build

trust & communication; international

outcome data; bring rehab into dialogue

Page 30: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Barriers to a new model in the US

• Oncologists have to give up their long-term survivors

• Survivors have to give up their oncologists

• Need risk-stratification algorithm; outcome data

• We have to start talking about supported self-

management (not just return to PCP)

– How to give survivors what they need re: what to look for, when

to contact healthcare team, rebuild their confidence to do this –

make it patient-centered?

– How to utilize technology to facilitate this?

– How to overcome ‘fee for intervention’ model?

Page 31: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Supporting Self-Management

BCBS of California Foundation, 2012; Empowerment and engagement among low-­income Californians: enhancing

patient-­centered care ; http://www.blueshieldcafoundation.org/sites/default/files/publications/downloadable/empowerment and

engagement_final.pdf

Page 32: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Barriers to a new model in the US

• Oncologists have to give up their long-term survivors

• Survivors have to give up their oncologists

• Need risk-stratification algorithm; outcome data

• We have to start talking about supported self-

management (not just return to PCP)

– How to give survivors what they need re: what to look for, when

to contact healthcare team, rebuild their confidence to do this –

make it patient-centered?

– How to utilize technology to facilitate this?

– How to overcome ‘fee for intervention’ model?

• Lack of coordination across providers

Page 33: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Care Coordination: A Case Study

PATIENT

PCP

Just Before Cancer Dx

Slides courtesy of Neeraj Arora, PhD

Page 34: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Care Coordination: A Case Study

PATIENT

PCP

Post-Treatment Care 6-10 years

ONCOLOGIST

GI SPECIALIST CARDIOLOGIST

NEUROLOGIST

Page 35: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

Importance of Care Coordination

PATIENT

Post-Treatment Care For the Elderly Survivor

1 in 4 survivors 65 – 74 years old have 5+ comorbidities

and are likely to see up to 12 physicians per year

Page 36: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

A Time of Great Opportunity…

• Growing attention to survivors’ long-term well-being and

preventive health (US)

• International focus on designing better, more integrated

healthcare for survivors that meets all of survivors’ needs

• More sophisticated technology is invented daily that can

help us meet survivors’ needs with better reach &

efficiency

• Growing numbers/disciplines of researchers and

clinicians entering survivorship science and practice

• Articulate and effective advocacy community: The

power of survivors’ voices!

Page 37: Cancer Survivorship & Cancer Rehabilitation: Building a ... · Cancer Survivorship & Cancer Rehabilitation: Building a New Integrated Model ... SEER Cancer Statistics Review, 1975-2008,

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