Transcript Cancer Survivors: Charting an Agenda for Research, Treatment and

Challenges in Implementation
of Survivorship Care Plans
Patricia A. Ganz, M.D.
Jonsson Comprehensive Cancer Center
UCLA Schools of Medicine & Public Health
Who are the Cancer
Survivors?
• More than 1 in 3 Americans will be diagnosed
with cancer in their lifetime
• More than 14 million Americans have a
personal history of cancer; >4% of US
population
• The number of cancer survivors will increase
sharply during the next 25 yrs with aging of
the population
Estimated and projected number of cancer survivors in the United States from 1977 to 2022
by years since diagnosis.
de Moor J S et al. Cancer Epidemiol Biomarkers Prev
©2013 by American Association for Cancer Research 2013;22:561-570
Estimated number of cancer survivors in the United States as of January 1, 2012 by cancer
site.
de Moor J S et al. Cancer Epidemiol Biomarkers Prev
2013;22:561-570
©2013 by American Association for Cancer Research
Esimated number of cancer survivors in the United States as of January 1, 2012 by time since
diagnosis and sex.
de Moor J S et al. Cancer Epidemiol Biomarkers Prev
2013;22:561-570
©2013 by American Association for Cancer Research
Estimated number of cancer survivors in the United States as of January 1, 2012 by cancer
site and years from diagnosis.
©2013 by American Association for Cancer Research
de Moor J S et al. Cancer Epidemiol Biomarkers Prev
2013;22:561-570
• Comparison of cancer survivors and agematched 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
Cancer Survivors (N=1817)
Excellent
Excellent
Very
Good
Good
Very
Good
Good
Fair
Fair
Poor
Poor
31% Fair & Poor
Yabroff, JNCI 2004
Noncancer Controls (N=5465)
18% Fair & Poor
P <.001
Number of Comorbid Conditions
Burden of Illness is Greater
60
50
40
%
Ca Surv
Noncancer
30
20
10
P<.001
0
0
Yabroff et al. JNCI 2004
1
2
>= 3
Cancer Survivors Need More Help with
Activities of Daily Living (ADLs)
Needs help with
instrumental ADLs
Cancer
survivors
N=1817
Noncancer
controls
N=5465
11.4%
6.5%
P <.001
Any limitation in any
way
36.2%
Needs help with ADLs
4.9%
23.8%
P <.001
3.0%
P=.003
Yabroff et al. JNCI 2004
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
Conclusions
• Most cancer survivors are older, and living
with more comorbid conditions and
limitations
• A cancer history will only be one reason they
will be visiting a health professional
• They are at risk for fragmentation of care--that is the perfect setting for care plans!
Role of treatment summaries and care
plans in health care
• Hospital discharge summary
– Required by accrediting bodies
– Communicates with the outpatient physician
– Often summarizes lengthy and complex
hospitalizations
• Discharge planning for patients
– Lets them know what procedures are planned,
medications to take, follow-up appointments
– Provided in a written format with copies in the
chart as a summary document
Why is this done?
• Hospitalizations are long and complicated
• Patients may have been too ill to remember
what went on and may still be sick at the time
of discharge
• Family members and the outpatient medical
team need to know what happened and what
follow-up is planned
• No randomized trials were done to test
this; it makes common sense!
Why is cancer different from other
chronic diseases?
• Cancer treatment is….
– Complex, lasting months to years
– Multi-modal
– Multi-disciplinary
– Toxic
– Expensive
– And often poorly coordinated; primarily in the
outpatient setting; separate MD offices
• Cancer treatment usually occurs in isolation from
primary health care delivery
Why does cancer care present such a
challenge?
• An average of 3 specialists/patient, with
treatments across time and space…outpatient,
inpatient, specialized treatment facilities….
limited communication among treating
physicians, multiple medical records
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.”
2005 IOM Findings:
Survivorship Care
• Survivorship care is a
neglected phase of the
cancer care trajectory
• Cancer recurrence, second
cancers, and treatment late
effects concern survivors
• Few guidelines on followup care
• Providers lack education
and training
2005 IOM Findings:
Survivorship Care
• Survivors may:
– be unaware of risk
– have no plan for followup
• Opportunities to intervene
may be missed
• Cancer care is often not
coordinated
• Models of survivorship care
not tested
2005 IOM Findings:
Quality Survivorship Care
• Chronic care
model applies
• Essential care
components
– Prevention
– Surveillance
– Intervention
– Coordination
Where does the Survivorship Care Plan fit
in the Chronic Care Model?
Survivorship Care Plan
Epping-Jordan, J E et al. Qual Saf Health Care 2004;13:299-305
Copyright ©2004 BMJ Publishing Group Ltd.
JOP, 2012
• US Survey of nationally representative medical oncologists
(n=1130) and PCPs (n=1020) regarding follow-up care of breast
and colon cancer survivors
• Provision and receipt of treatment summaries (TS) and
survivorship care plans (SCP) was queried from each group
• PCPs receipt of SCPs was associated with better PCP-reported care
coordination, physician-physician communication, and confidence
in survivorship care knowledge (p<.05)
Forsythe et al. JNCI 2013
Tools and Resources
• ASCO Survivorship Templates and Resource
Center
• Journey Forward
• LIVESTRONG Survivorship Care Plan
http://www.asco.org/practi
ce-research/challengesimplementingsurvivorship-program
http://www.asco.org/practic
e-research/survivorshipcare-clinical-tools-andresources
Patient resources
on www.cancer.net
Colon Cancer Adjuvant Therapy Treatment Plan & Summary
The Treatment Plan and Summary provide a brief record of major aspects of colon cancer adjuvant chemotherapy. This is not a complete patient
history or comprehensive record of intended therapies.
Provider name:
Patient name:
Patient ID:
Age at
diagnosis:
Patient DOB: (___/___/___)
Patient phone:
Support contact name:
Support contact relationship:
Support contact phone:
Background Information
Cancer detection:
Site in colon:
□ Screening
□ Right
□ Transverse
Predisposing conditions: □ None
Family history:
□ Symptoms
□ None
□ Left
□ Sigmoid
□ Inflammatory bowel disease
□ 2nd degree relative
Pre-op colonoscopy to cecum:
□ Incidental
□Yes
□ No
□ FAP
□ 1st degree relative
□ HNPCC
□ Multiple relatives
Other lesions:
polyps
Primary colon operation:
Surgery type:
□ Elective □Emergent
Stage: □ IIA □ IIB □ IIIA □ IIIB □ IIIC
Number of lymph nodes removed:
Notable pathology findings:
□ None
□ Low risk polyps
Date of surgery: (___/___/___)
CEA preop:
CEA post-op:
T stage: □
T1 □ T2
□ T3 □ T4
N stage: □ N0
□ N1
Number of lymph nodes positive:
□ N2
□ High risk
White sections to be completed prior to chemotherapy administration, shaded sections following chemotherapy
Height:
in/cm
Pre-treatment weight:
lb/kg
Post-treatment weight:
lb/kg
Pre-treatment BSA:
Name of regimen:
Treatment on clinical trial: □ Yes
Start Date:
□ No
(___/___/____)
Bio/Chemotherapy Drug Name
Possible side effects of this regimen:
□ Hair loss
□ Neuropathy
□ Low blood count
□ Fatigue
□ Diarrhea
□ Dehydration
□ Nausea/Vomiting
□ Other:
End Date:
Rou
te
Dose
Schedule
(___/___/____)
Dose reduction
needed
□ Yes_____%
□ No
□ Yes_____%
□ No
□ Yes_____%
□ No
□ Yes_____%
□ No
Number of cycles
administered
Number of cycles containing oxaliplatin:
Serious toxicities during treatment (list all):
Hospitalization for toxicity during treatment: □ Yes
□ No
Reason for stopping adjuvant treatment:
Disease status at end of treatment: □ No evidence of disease
□ Possible recurrence
□ Recurrence
Leading
Survivorship Care Planning
www.journeyforward.com
About Journey Forward
“Journey Forward reflects the best of cross-industry collaboration that can fulfill the vision of survivorship
documented in the IOM report, ‘Lost in Transition.’”—Survivor & advocate
Journey Forward is the result of a 7-year, cross-industry collaboration
between:
•
•
•
•
•
Survivors: National Coalition for Cancer Survivorship
Oncologists & researchers: UCLA Survivorship Center
Nurses: Oncology Nursing Society (ONS)
Pharmaceutical industry: Genentech
Insurance industry: WellPoint
Journey Forward provides a free innovative and evolving suite
of tools to ensure patients get a Survivorship Care Plan.
Survivorship Care Planning
“What a thoughtful tool to support cancer survivorship care!
It is a must-have for patients to use with their health care providers.” –Public health professional
Journey Forward Care Plans:

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
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Summarize the patient’s diagnosis and treatment
Provide a schedule for follow-up care
Identify the provider to contact for individual tests and follow-up
Identify patient’s needs, concerns and ongoing symptoms
Provide tailored information on managing the patient’s symptoms
Educate patients and professionals on what to expect
Provide information on surveillance and what to watch for
Utilizes ASCO’s chemotherapy treatment summary templates
Incorporate ASCO surveillance guidelines
Support all cancer types
Can be fully customized by users
Survivorship Care Plan Builder
• For oncology professionals
• Easy-to-use: Use cancer-specific care plan templates/forms.
• Fully customizable: Add your logo. Build your own templates. Edit your
regimen and document libraries.
• Secure: Store your data securely behind your firewall—not on the web or a
3rd party server.
• Sharing & collaboration: Work with others on care plans. Share your
customizations.
• Data integration: Import patient data from your cancer registry.
New
My Care Plan
• A helpful tool for survivors
• Empowers survivors to initiate their own
Care Plan
• Can be completed by the patient with
the help of his or her oncology provider
• Can be printed and/or emailed to
primary care provider and others on care
team
 Available as a mobile app
 Available as writable/printable PDF form
Enhanced
Survivorship Library
• For patients and
professionals
• Includes important
factsheets:
–
–
–
–
What to expect
Symptoms to watch for
Surveillance guidelines
Symptom management
• Available on all devices
Survivorship Tool Suite
My Care Plan
Survivorship Library
Survivorship Care Plan Builder
http://www.livestrongcareplan.org/
Cancer Care Trajectory
Cancer-Free
Survival
Recurrence/
Second Cancer
Start Here
Managed
Chronic or
Intermittent
Disease
Treatment With
Intent to Cure
Diagnosis and
Staging
Treatment Failure
Survivorship
Research &
Survivorship Care
Palliative
Treatment
Death
IOM, 2005
Definitions
• Long-term effect: a symptom or problem that
begins during cancer treatment and persists
when treatment ends e.g., fatigue, cognitive
complaints, pain
• Late effect: a symptom or problem that occurs
months to years after treatment ends, e.g. a
second cancer, congestive heart failure,
lymphedema
• Some symptoms or problems can either be
long-term or late effects---confusing!
Survivorship Health Care Delivery
• 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
Cancer Care Continuum
Incorporation of palliative care across the care continuum
Common Palliative Care Concerns
•
•
•
•
•
•
•
•
•
•
Pain
Fatigue
Depression
Insomnia
Physical limitations
Cognitive changes
Lymphedema
Sexual dysfunction
Menopause related symptoms
Body Image
Consultant Specialists Required
•
•
•
•
•
•
•
•
Mental health
Pain management
Physical medicine/vocational rehab
Endocrinology
Cardiology
Gynecology/fertility
Pulmonary
Neurology/neuropsychology
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
– Genetic counseling for hereditary cancers
• 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 at UCLA may not be right in
other settings
• Survivorship care plans can educate patients
about how they can enhance their recovery
Target Populations
• Incident versus prevalent cases
• Special issues related to childhood cancer
survivors
• Need to determine who you are serving
and how you will provide services
What is needed to implement
survivorship care planning?
• Acceptance of cancer as a chronic disease—
following an initial period of extraordinarily
complex therapy!
• Staff support for time required to prepare and
communicate the plan
• Expand the evidence-base of knowledge re: late
effects, follow-up needs and survivorship care
• Train all health professionals in the needs of the
growing number of cancer survivors—how to act
on the care plan recommendations
Cancer Care Trajectory
Cancer-Free
Survival
Recurrence/
Second Cancer
Start Here
Medical Outcomes
and Quality of Life
Treatment With
Intent to Cure
Diagnosis and
Staging
Safer therapies
Risk assessment and intervention at diagnosis
Survivor health care delivery:
Palliation, Prevention
and Health Promotion