Transcript The ABCs of - Baptist Memorial Health Care

The ABCs of Achieving High
Quality Survivorship Care
Melissa M. Hudson, MD
Cancer Survivorship Division
Overview
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Epidemiology of survivorship
Health risks affecting survivorship
Risk-based survivor care
Strategies and tools to achieve quality
survivorship care
Clinical practice guidelines
– Survivorship care plans
– Models of survivorship care
–
Epidemiology of Cancer Survivorship
•
68% with 5-year survival in U.S.
83% in childhood cancers (0-14 years)
– 13 million survivors
– 18 million by 2022!
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Lifetime probability of cancer in U.S.
Men: One in 2
– Women: One in 3
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Majority diagnosed > 60 years of age
Surveillance Epidemiology, and End Results, 2002-2008
Health
Concerns
After
Cancer
Skeletal maturation
Linear growth
Intellectual function
Emotional/social maturation
Mental
health
Sexual development
Cardiac
Education
Growth &
Development
Employment
Endocrine
Insurance
Social
interactions
GI/Hepatic
Psychosocial
Chronic
symptoms
Cancer
Organ
Function
Genitourinary
Musculoskeletal
Neurologic
Physical
& body
image
Subsequent
Cancers
Recurrent
primary
cancer
New primary
neoplasms
Fertility &
Reproduction
Fertility
Health of offspring
Sexual functioning
Pulmonary
Prevalence of health conditions in childhood
cancer survivors in St. Jude Lifetime Cohort
1.0
Clinical ascertainment of late effects in 1713 adult survivors
0.4
0.8
0.6
95.5% will have > 1
chronic health condition
80.5% will have a
serious/disabling or lifethreatening chronic health
condition
Any chronic condition
Serious/life-threatening chronic condition
0.0
Median time
from Dx: 25 yrs
(range 10-47)
By age 45 years it
is estimated
that……
0.2
Median age at
study: 32 yrs
(range 18-60)
Cumulative Prevalence
Median age at
Dx: 6 yrs
(range, 0-24)
0
10
20
30
40
Age in Years
Hudson et al, JAMA, 2013
50
60
0.95
US Female
US Male
0.90
Population Controls
0.85
Cancer Survivors
0.80
0.75
0.70
Survival function estimate
1.00
Late Mortality in 5+ Year Survivors
All Cause Mortality in the CCSS Cohort
SMR
Second cancer
Cardiac
Pulmonary
5
10
95% CI
CCSS
Female
15.2 13.9 – 16.6
7.0
5.9 – 8.2
8.8
6.8 – 11.2
15
20
CCSS
Male
25
Years since diagnosis
Mertens, et al, JNCI 2008
30
35
Improving Survivorship Outcomes
CANCER SURVIVORS
.
Health-related
and QOL
Outcomes
Cancer
Diagnosis and
Treatment
“Secondary “
Prevention
Evidence-based
Clinical Care
Guidelines
“Primary”
Prevention
High-risk Groups
Development of
Intervention
Strategies
Implementation
Clinical Trials
of Efficacy
Issues Impacting Cancer Treatment
Associated Morbidity
Health Care
System
Patient
Cancer
Treatment
Morbidity
Provider
Cancer
Issues
Cancer
Treatment
IssuesImpacting
Impacting
Cancer
Treatment
Associated
AssociatedMorbidity
Morbidity
Health Care
System
Patient
Cancer
Treatment
Morbidity
Provider
Cancer
• Histology/involved sites
• Biology/response
• Treatment
• Surgery
• Chemotherapy
• Radiation
• Transplant
• Transfusion
• Treatment events
Issues
Cancer
Treatment
IssuesImpacting
Impacting
Cancer
Treatment
Associated
AssociatedMorbidity
Morbidity
Health Care
System
Cancer
Cancer
Treatment
Morbidity
Provider
Patient
• Age at treatment &
attained age
• Sex, race & ethnicity
• Familial & genetic factors
• Pre & co-morbid conditions
• Health behaviors
• Cognitive & developmental
status
• Health knowledge
• Health risk perceptions
• Self efficacy
• Insurance & healthcare
access
Issues
Cancer
Treatment
IssuesImpacting
Impacting
Cancer
Treatment
Associated
AssociatedMorbidity
Morbidity
Patient
Health
Care
System
Cancer
Treatment
Morbidity
Cancer
• Survivorship education &
training
• Survivorship experience
• Practice style
• Perceptions regarding
preventive care
Provider
• Access to survivorship
resources
• Knowledge & access to
individual survivor health
history
Issues Impacting Cancer Treatment
Associated Morbidity
Cancer
Patient
Cancer
Treatment
Morbidity
Provider
Health
Care
System
• Financing & payment
policies
• Organization & affiliation of
providers
• Data systems & information
sharing
• Models of survivorship care
• Insurance coverage and
benefits supporting
survivorship care (especially
preventive, psychosocial
services)
• Community resources
• Survivorship advocacy
activity
Achieving High Quality Survivorship Care
Health Care
System
Patient
Cancer
Treatment
Morbidity
Provider
Cancer
Risk-Based Survivor Care
• Surveillance for primary/subsequent cancers
• Screening and management of late effects
• Assessment and support of psychosocial
functioning
• Education about cancer-related health risks
and behaviors/conditions modifying risk
• Assistance with identifying and meeting
medical and psychosocial challenges
Institute of Medicine,
2005
“Health care providers
should use systematically
developed evidence-based
clinical practice guidelines,
assessment tools, and
screening instruments to
identify and manage late
effects of cancer and its
treatment.”
Pediatric Guideline Design
Evidence linking late
effects with
therapeutic
exposures
Allows identification of highrisk categories
Screening
recommendations
based on
expert clinical
experience
Matches magnitude of risk
with intensity of screening
Evidence-Based Guidelines for Childhood Cancer Survivors:
A Hybrid Model
www.survivorshipguidelines.org
Clinical Practice Guidelines
• Exposure-based
– Includes screening and counseling based on specific
chemotherapy, radiation doses/volumes and surgery
• Disease-based
– Focuses on modalities and health concerns related to a
specific malignancy (e.g., NCCN breast, prostate)
• Organ-system based
– Considers specific organ systems affected by cancer or
cancer therapy
• Symptom-based
– Targets symptoms common to many cancer diagnoses
and treatment (e.g., fatigue, sleep, cognition)
Guidance for Long-Term/Late Effects
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Depression & anxiety
Fatigue
Neuropathy
Weight change
Sexual dysfunction
Cardiac dysfunction
Chronic pain
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Lymphedema
Osteoporosis
Cognitive dysfunction
Impaired fertility
Second cancers
Menopausal
symptoms
Institute of Medicine,
2005
“Patients completing
primary treatment
should be provided with
a comprehensive care
summary and follow-up
plan that is clearly and
effectively explained.”
Care Across Survivorship Spectrum
Cancer
Diagnosis
Primary Interventions
Risk-adapted therapy considering
cancer- and host-related factors
Long-Term
Survival
Oncology
Care
Primary
Care
Hudson M, Cancer 2005
Secondary Interventions
Health education
Health screening/surveillance
Risk-reducing interventions
Survivor
Health &
QoL
Challenges with Care Transitions
 Survivors/Families
Are uninformed about details of cancer history
Have strong bond with treating clinicians
Fear transition
 Oncology providers
Want to see long-term survivors
May not prepare survivor/GP for care transition
May not be informed about survivorship issues
May not consistent address preventive care
Challenges with Care Transitions
 Primary care providers
Unfamiliar with survivor health issues
Subtypes are numerous/diverse
Treatments are diverse/constantly evolving
Have limited incentive to develop expertise
Many subtypes are rare
May be uncomfortable with caring for survivors,
especially those who are medically complex
Oncology & Primary Care Providers
Awareness of Late Effects
Survey of PCPs (n = 981) and Oncologists (n = 1,125) from AMA Masterfile
Absolute response: 57.6% (PCPs, 57.9%; oncologists, 58.3%)
Late Effect
(Therapy)
Oncologist
Aware
PCP
Aware
Cardiac dysfunction
(doxorubicin)
95%
55%
Neuropathy
(oxaliplatin)
97%
22%
Premature menopause
(cyclophosphamide)
71%
15%
Nekhlyudov, JOP, 2013
Survivorship Care Plan
Personalized document from oncology clinician:
• Summary of cancer history/treatment
• Primary cancer surveillance plan
• Cancer/cancer treatment health risks
• Subsequent cancer/late effects screening
• Lifestyle impact on cancer-related risks
• Screening for/management of comorbid conditions
• Definition of roles of involved providers
• Resources to address medical/psychosocial needs
Survivorship Care Plans (SCPs)
in Research and Practice
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Do SCPs address known deficiencies in care?
Do they promote comprehensive care?
Can they be developed in busy clinics?
Are they being used once provided?
When is the optimal time to provide them?
Have SCPs been implemented widely?
Do SCPs include info recommended by the IOM?
Salz, CA Cancer J Clin, 2012
Survivorship Care Plans (SCPs)
in Research and Practice
• Concerns regarding feasibility of implementation
• Limited data suggesting suboptimal uptake and
adherence to inclusion of IOM components
• Limited data addressing impact on health
outcomes and access to care
• No data evaluating cost to benefit of SCPs
• Consensus regarding potential benefits in
education and care coordination
Salz, CA Cancer J Clin, 2013
Need for SCP research
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Critical components
Optimal format(s)
Timing of delivery
Impact on health
outcomes
 Cost: benefit
Institute of Medicine,
2005
“…qualified organizations
should support demonstration
programs to test models of
coordinated, interdisciplinary
survivorship care in diverse
communities and across
systems of care.”
Models of Survivorship Care
Treatment of Cancer
Time
Cancer Center Follow-up
Long-Term Follow-Up
Community
Follow-up
Shared
Care
Specialized
LTFU Clinic
Other Models
Adapted from Singer et al, Pediatr Blood Cancer, 2013
Models of Survivorship Care
Specialized LTFU Program
• Usually based at cancer center
– Cancer-related consultations
– General or disease-oriented
– Most do not provide primary
care
• Multidisciplinary care team
– Medical
– Psychosocial
• Core components
– Survivorship care plan
– Delivery of risk-based care
• Venue for research & training
health care professionals
Models of Survivor Care
Specialized LTFU Program
Community LTFU Care
• Backbone of care for pediatric
survivors
– Limited number see adults
– Cancer-related consultations
• Based at hospital or cancer
center
• Multidisciplinary care team
– Medical
– Psychosocial
• Core components
– Survivorship care plan
– Delivery of risk-based care
• Venue for research & training
health care professionals
• Geographically and financially
more accessible
• Integrates survivor care and
primary care
– Focus on primary care health
education
– Less focus on cancer-related
health education
• Risk-based survivor-focused care
dependent on provider/ survivor
knowledge
• Supports independence of young
adult survivors
• Poses challenges to outcomes
research
Shared Survivorship Care
• Follow-up in cancer center with transition to
community
• Ongoing contact with community providers
• Continuous availability of cancer center team
• Provides services to larger number of survivors
• Potentially more cost-effective than cancer
center follow-up
• Maintains link to cancer center to monitor late
outcomes
Gaps in Knowledge Regarding Long-term
Outcomes: A Theoretical Model
Cumulative Incidence
1.00
Cancer Survivor Population
General Population
.75
?
.50
Advanced Onset of
Morbidity Associated with
Cancer and Therapy
.25
Excess
Lifetime
Morbidity
Associated
with Cancer
and Therapy
?
0
0
10
20
30
40
50
60
Age (Years)
Known
Emerging
Unknown
70
Achieving Quality Survivorship Care
• Develop guidance for clinical management of longterm and late effects
• Increase collaboration between oncology and
primary care providers
• Improve health professional education and
training
• Enhance patient/family education and selfadvocacy
• Support survivorship research
• Promoting policy change to ensure access to
health care services
Achieving High Quality Survivorship Care
• Providing care in diverse health care settings
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Cancer-center
Community oncologist
Primary care
Shared care
• Serving diverse survivor populations
– Race/ethnicity
– Cultural
– Education
• Maintaining flexibility
– “One size does not fit all”
Research to Address Knowledge Gaps
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Characterize outcomes after cancer
Characterize high risk populations
Inform optimal screening methods
Define standards for survivorship care
Evaluate impact of care plans
Determine effective models of care
Identify methods to improve care coordination
Identify methods to motivate participation in
health promotion
Achieving High Quality Survivorship Care
• Advocating for policy change
– Health Care Reform & Survivorship Care
• Focus on screening, wellness, prevention
– Improving reimbursement for care
• Coordination of care by health care providers
• Interventions to address psychosocial/practical
concerns
– Increase policy maker awareness of
survivorship as a public health issue
• Funding for cancer research
Thank you for your attention!
Acknowledgements
•American Lebanese Syrian Associated Charities (ALSAC)
•NCI Cancer Center Support (CORE) grant CA 21765