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GW Cancer InstituteCenter for the Advancement of
Cancer Survivorship, Navigation and Policy
Patient-Centered Standards for Cancer Diagnosis, Treatment and
Survivorship
Anne Willis, MACancer Survivor
Director, Division of Cancer SurvivorshipDirector, Center for the Advancement of Cancer
Survivorship, Navigation and PolicyGW Cancer Institute
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Objectives
• Define patient-centeredness as a function of quality care
• Describe several organizations that set care standards
• Discuss patient-centered standards that impact cancer care across the continuum
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Quality Care
• Safe
• Effective
• Patient-Centered
• Timely
• Efficient
• Equitable
Institute of Medicine. Crossing the Quality Chasm. 2001.
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“For diseases that are often chronic and sometimes incurable, with interventions that
can have toxic and long-term consequences, it is especially important that decisions
influencing patient outcomes reflect the patient’s own perspective. Cancer provides a
compelling case in point.”
Why Patient-Centeredness?
Lipscomb J, Gotay CC, Snyder C. Patient-reported outcomes in cancer: a review of recent research and policy initiatives. CA, 2007;57: 278-300, p 278.
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Patient-Centered Definition:Institute of Medicine
Health care that establishes a partnership among practitioners, patients and their
families (when appropriate)
Institute of Medicine. Crossing the Quality Chasm. 2001.
to ensure that decisions respect patients’ wants, needs, and preferences
and that patients have the education and support they need to make decisions and participate in their own care.
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Why Patient-Centeredness?
• Right thing to do
• Improved care
• Improved well-being
• Addresses disparities
• Better value
Epstein et al. Health Affairs. Why the nation needs a policy push on patient-centered health care. 2010.
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Cancer Care Continuum
Prevention Diagnosis Treatment
Post-treatment
End of Life
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Care Standards
• National Comprehensive Cancer Network (NCCN)
• American Society of Clinical Oncology (ASCO)
• Association for Community Cancer Centers (ACCC)
• Commission on Cancer (CoC)
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The Commission on Cancer (CoC)
• American College of Surgeons
• Consortium of professional organizations– Physicians, nurses, administrators, registrars,
govt, etc.– Patient advocacy groups
• 1,500 accredited institutions– Care for 71% of newly diagnosed patients
• Standards across the continuum
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CoC: New Patient-Centered Standards
• 2.3: Risk assessment and genetic counseling
• 2.4: Palliative care
• 3.1: Patient navigation process
• 3.2: Psychosocial distress screening
• 3.3: Survivorship care plan
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GWCI Center for the Advancement of Cancer Survivorship, Navigation & Policy
• National and local training center– In-person and online trainings for different
audiences
• Focus on – Widespread implementation of patient-
centered standards– Advancing the fields of navigation and
survivorship through collaboration
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Patient Navigation
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Definition
Patient Navigation is an intervention that addresses barriers to quality standard care by providing individualized assistance to patients, survivors and families.
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Results of Harlem Study
39%
70%
0% 10% 20% 30% 40% 50% 60% 70% 80%
Fiv
e Y
ear
Su
rviv
al R
ate
Before accessto screening &patientnavigation(1964-1986)*
After access tosceening &patientnavigaton(1995-2000)* *
Freeman HP, Wasfie TJ (1989). Cancer of the breast in poor black women. Cancer, 63(12), 2562-2569. Oluwale/Freeman, Journal of American College of Surgeons, 2003.
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Evolution of Patient Navigation
• Expansion across the cancer continuum
• Replication in various diseases
• NCI Patient Navigation Research Program
• Competitive advantage for institutions
• Ease workforce shortages
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What Navigators Do• Reduce barriers• Educate • Build partnerships in the community• Coordinate appointments• Maintain communication• Arrange for/connect with support• Teach self-advocacy• Provide access to clinical trials
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CoC: Patient Navigation Process
• Assess community needs– Identify disparities, barriers or gaps in care
• Develop and implement a navigation process to address issues– Work with community-based or national
organizations to provide resources
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Other Standards
• National Patient Navigation Collaborative
• ACCC guidelines
• Professional Societies– Academy of Oncology Nurse Navigators– National Coalition of Oncology Nurse
Navigators– Oncology Nursing Society– National Association of Social Workers
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Psychosocial Distress
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Areas of Need
Institute of Medicine. Cancer Care for the Whole Patient. 2008.
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Barriers to Screening• Knowledge
• Lack of clarity
• Beliefs
• Values
• Assumptions
• Level of skill
• Pressure to do more with less
• System barriers
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CoC: Psychosocial Distress Screening
• Process in place to monitor distress– Time period and method defined by cancer
committee– Services are provided on-site or by referral
• May include community or national organizations
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Other Standards
• NCCN Guidelines for Management of Psychosocial Distress
• ASCO/QOPI measure– Patient emotional well-being assessed by the
second office visit
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Survivorship
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Who is a Cancer Survivor?• Several definitions
– 5 years after diagnosis
– From the moment of diagnosis through the balance of life
– Including family and caregivers
– After completion of treatment
• Survivors don’t always use the word survivor
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Why the Increased Focus on Survivorship?
• Rapidly growing population of survivors due to advances in diagnosis and treatment– Nearly 13.7 million cancer survivors in the U.S. – Predictions of 18 million by 2020– Five-year adult survival is 62%– Ten-year survival for pediatric cancers is 75%
• Greater emphasis on patient-centered care• Increasing expectations by survivors for good quality of
life
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National Reports
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Survivorship by Time Since Diagnosis
Source: American Cancer Society, Cancer Treatment & Survivorship Facts & Figures, 2012; Data Modeling Branch, Division of Cancer Control and Population Sciences, NCI
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Cancer and Comorbidities
29
Source: Smith, et al. (2008). Cancer, comorbidities, and health-related quality of life of older adults. Health Care Finance.
Osteoporosis
Cancer
Psychosocial Stress (anxiety, depression, insomnia, cognitive deficiency)
Diabetes
Heart Disease, Hypertension, Stroke
Arthritis
Emphysema, Asthma, COPD
Overweight / Obesity
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Quality of Life Domains and Impact of Cancer and its Treatment
Source: City of Hope, Beckman Research Institute, 2004, reproduced with permission in the American Cancer Society’s Cancer Treatment & Survivorship Facts & Figures, 2012
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Survivorship Terms
• Long-term effects– Side effects or complications of treatment– Begin during treatment and continue beyond
treatment
• Late effects– Unrecognized toxicities that are absent or
subclinical at the end of treatment– Occur months and years after treatment
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Common Long-Term / Late Effects by Treatment Type
Treatment Long-term side effects Late side effects
Chemotherapy FatiguePremature menopause
Sexual dysfunction Neuropathy“Chemo brain”Kidney failure
Vision/cataractsInfertilityLiver problemsLung diseaseOsteoporosisReduced lung capacitySecond primary cancers
Radiation therapy FatigueSkin sensitivity
Lymphedema
CataractsCavities and tooth decayCardiovascular diseaseHypothyroidismInfertilityLung diseaseIntestinal problemsSecond primary cancers
Surgery Sexual dysfunction IncontinencePain
Body image disturbance
Functional disability
Infertility
Source: Mayo.com
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Top 5 Survivor Concerns
0
10
20
30
40
50
60
70
FearfulIllness Will
Return
Fatigue/Lossof Strength
Concernabout
Relapsing
Fears aboutthe Future
SleepDifficulties
1-YR 3-YRS 6-YRS 11-YRS
Source: American Cancer Society Studies of Cancer Survivors
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Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Physical Concerns
9
2213 15 19
44
31
30 2511
0
10
20
30
40
50
60
Energ
y
Concent
ratio
n
Sexual
Functio
ning
Nuerop
athy
Pain
Did NOT receive care
Received care
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Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Emotional Concerns
22 25 17 12 9
53 3946
3731
010203040
50607080
Fear o
f rec
urre
nce
Saddn
ess
and
depre
ssion
Grief a
nd id
entity
Family
mem
ber r
isk
Perso
nal a
ppear
ance
Did NOT receive care
Received care
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Survivor Needs LIVESTRONG Survey
Percentage of Respondents Who Received Care for Practical Concerns
37
11 10 6
36
2923
15
0
10
20
30
40
50
60
70
80
Schoolissues
Employmentissues
Debt Insurance
Did NOT receive care
Received care
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Current Survivorship Care• Patients find follow-up by oncologists
reassuring• Duration of follow-up is variable• Limited follow-up guidelines for adults• Focused on recurrence and surveillance• Limited communication with primary care
provider
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Goals of Survivorship Care• Follow-up care
– Surveillance for recurrence– Screening for second cancers– Assessment and treatment of medical and
psychosocial issues– Health promotion: smoking cessation, diet
and exercise
• Communication and coordination with primary care physician
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Survivorship CareTreatment Summary
• Diagnostic tests and results• Tumor characteristics• Dates of treatment initiation and completion• All treatment, including agents used, regimen,
total dosage, response, toxicities• Psychosocial and other supportive services
provided• Full contact information for treating institutions• Key point of contact for coordinating care
Institute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.
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Survivorship CareFollow-up Care Plan
• Likely course of recovery/ongoing maintenance needs• Recommended cancer screening and tests, including
schedule and who should perform it• Information on
– Long term and late effects and their symptoms– Signs of recurrence and second cancers– Possible effects on relationships, sexual functioning, work,
parenting, and future needs for psychosocial support– Potential insurance, employment, and financial consequences and
referrals when needed• Recommendations for healthy behaviorsInstitute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.
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Survivorship CareFollow-up Care Plan
• As appropriate, information on genetic counseling and testing
• As appropriate, information on known effective chemoprevention strategies for secondary prevention
• Referrals to specific follow-up care providers• Listing of cancer-related resources and
information
Institute of Medicine Lost in Transition report. Adapted from the President’s Cancer Panel.
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Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates
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Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates
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Survivorship Care Plan Template
American Society of Clinical Oncology (www.asco.org) free templates
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Survivorship Care Plan Template
GWCI (www.gwmc.edu/gwci) free template
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Survivorship Care Plan Template
GWCI (www.gwmc.edu/gwci) free template
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Challenges of Survivorship Care
• Fragmented delivery system
• Lack of awareness of the late effects of cancer and its treatment
• Poor communication
• Lack of survivorship standards of care
• Capacity for delivering care
Institute of Medicine Lost in Transition report.
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Challenges of Survivorship Care
• Lack of agreement on who should provide care
• Diverse survivorship populations
• Huge change in the culture of oncology
• Great need for patient and provider education
• Still trying to understand the right economic model
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CoC: Survivorship Care Plan
• Provided by principal provider(s) who coordinated treatment with input from other care providers
• Given to patient upon completion of treatment• Contains record of care received to include:
– Disease characteristics– Follow-up care plan including recognized evidence-
based standards of care– Minimum standards included in IOM fact sheets
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Other Standards
• NCCN disease-based guidelines
• ASCO Survivorship Guidelines
• ACCC guidelines
• National Cancer Survivorship Resource Center (The Survivorship Center)
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The Survivorship Centerwww.cancer.org/survivorshipcenter
• Collaboration with GWCI and American Cancer Society, cooperative agreement with the CDC
• Current activities:– Guidelines for primary care providers– Cancer Survivorship E-Learning Series for
Primary Care Providers– Provider and survivor resources
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Conclusion
• Widespread recognition of the need for patient-centered care
• Cancer standard-setting organizations have the potential to rapidly influence cancer care
• Patients will benefit greatly from patient-centered cancer care across the continuum
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GW Cancer InstituteCenter for the Advancement of
Cancer Survivorship, Navigation and Policy
Thanks!
Anne Willis, [email protected]
202-994-0988