Creating and Implementing a
Survivorship Program in Your Practice
Jennifer Klemp, PhD, MPH
Assistant Professor
Director, Cancer Survivorship
University of Kansas Cancer Center
March 2013
Disclosure
Name of Company
Cancer Survivorship
Training, Inc
Founder/CEO
Speakers Bureau
√
Novartis
Pharmaceuticals
Company
√
Pfizer Oncology
√
Overview
This course will healthcare providers:
• Demands of Cancer Survivorship
– Who, What, When, Where, Why, How
• Recognize the majority of cancer survivors experience longterm and late effects of their treatment
• Understand how Survivorship Care can promote and
contribute to long-term health and integration into the EHR
• Delivering Multidisciplinary Survivorship Care: What does it
look like?
• Common Concerns & Research Targets
3
“Who” is a Cancer Survivor?
A cancer
survivor is
anyone who has
been diagnosed
with cancer –
from the time of
diagnosis and
for the balance
of his or her life.
NCCN: National Coalition for Cancer Survivorship
http://www.canceradvocacy.org/
4
Cancer Control Continuum
Diagnosis
Early Detection
Prevention
• Diet/Exercise
• Sun
Exposure
• Alcohol
• Tobacco
Control
• Chemoprevention
•Cancer
screening
Pap test
Mammogram
PSA/DRE
Fecal occult
blood test
Colonoscopy
•Awareness of
cancer risk,
signs, symptoms
• Oncology/
surgery
consultation
• Tumor
staging
• Informed
Decision
Making
Treatment
• Chemotherapy
• Surgery
• Patient
counseling
& decision
making
• Clinical
trials
Survivorship
• Long-term
follow-up/
surveillance
• Manage lateeffects
End of
Life
• Symptom
management
• Rehabilitation
• Support
patient
& family
• Coping
• Hospice
• Psychosocial
• Health
promotion
• Informed
decision
making
• Radiation
• Maintenance
therapy
• Prevention
• Palliative Care
Phases of Cancer Care
Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.
“Who”: Growing Number of Cancer
Survivors?
Estimated
18 million by
2020
http://cancercontrol.cancer.gov/ocs/prevalence/prevalence.html#survivor; http://www.nih.gov/news/health/jan2011/nci-12.htm. Accessed July 25, 2011.
6
“Who”: Age of Cancer Survivors
Estimated Number of Persons Alive in the U.S.
Diagnosed With Cancer by Current Age*
*(Invasive/1st Primary Cases Only, N=11.4M survivors)
“Who”: Estimated Number of Cancer Survivors in the
U.S. based on November 2009 SEER data by Site
*(Invasive/1st Primary Cases Only, N=11.4M survivors)
“Who” Delivers Survivorship Care
Survivorship care is by nature multidisciplinary
and ideally provided using a team approach
Specialty/Pri
mary Care
Mental
Health
Physical
Therapy/
Occupational
Therapy
Pain
Management
Neurology/
Neuropsychology
Pulmonary
Gynecology/Urology
Endocrinology
Sexual Healht/Fertility
Cardiology
IOM, 2006
9
“What”: Survivorship Care is a
Dynamic Process
Physical/Medical
Social/Well Being
Psychosocial
Existential/Spiritual
A multidisciplinary approach to survivorship care considers a providers’ expertise and
aims to meet each survivors unique physical, social, psychosocial and spiritual needs
“What”: Manage the Physical
Consequences of Cancer Treatment
Long-term Side Effects
Late Side Effects
• Chemotherapy
• Chemotherapy
Fatigue, endocrine
symptoms, infertility,
neuropathy, cognitive
function, heart, kidney, and
liver problems
• Surgery
Scars, chronic pain
• Radiation Therapy
Fatigue, skin sensitivity
– 2nd primary cancers, cataracts,
infertility, liver problems, lung
disease, osteoporosis/endocrine
issues, cognitive function, weight
gain
• Surgery
– Lymphedema, scar tissue
• Radiation Therapy
– Cataracts, heart, lung, intestinal
and thyroid problems, second
primary cancers, memory
problems, cavities and tooth
decay
11
“What”: Manage the Psychosocial
Late and Long-Term Effects of Cancer
Treatment
• Psychological
– Depression, anxiety (fear of recurrence),
uncertainty, isolation, altered body image
• Social
– Changes in interpersonal relationships,
concerns regarding health or life insurance,
job loss, return to school, financial burden
• Existential and spiritual issues
– Sense of purpose or meaning,
appreciation of life
12
“When”: Across the Continuum of
Care- Modified Cancer Care Trajectory
Cancer-free
survival
Delivery of survivorship
education & preventive strategies
Start
Here
Recurrence/
second cancer
Managed
chronic or
intermittent
disease
Treatment with
intent to cure
Diagnosis and
staging
Delivery of post-treatment
survivorship care
Treatment failure
Delivery of survivorship care
in the advanced cancer setting
Palliative
treatment
Death
Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at
http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.
13
“Where” Do Cancer Survivorship
Receive their Care?
• Multidisciplinary
– physician, nurse practitioner, psychologist, social worker
• Disease-specific
– Breast, prostate
• Consultative service
– One-time comprehensive visit
– Treatment Summary and Care Plan
• Integrated Care Model
– Usually a NP works within the team
– Ongoing care
• Shared Care Model
– Collaboration with primary care
14
“Where”
Elements of Shared Care Delivery
• Care shared by two or more clinicians of different
specialties (ie. Oncology and Primary Care)
• Who does what: understanding of roles and responsible
of care
• Knowledge transfer
– Treatment summary and care plan


Specific information on disease
General information about late & long-term effects
• Communication channels
– Contact information for oncology physicians and nurses
• Active patient involvement
– Encouraged to contact primary care physician with problems
– Provided with the information given to the primary care physician
Renders et al: Diabet Med 20:846-852, 2003;
Jones et al: Am J Kidney Dis 47: 103-114, 2006
Neilsen et al: Qual Saf Health Care 12(4) 263-272.
“Why”: Recommended by National
Experts
The Institute of Medicine report on cancer survivorship states:




Survivorship care is a neglected phase of the cancer care trajectory
Cancer recurrence, second cancers, and treatment late effects concern survivors
Few guidelines are available for follow-up care
Providers lack education and training
16
“Why”: Current Delivery is
Fragmented, Poorly Coordinated
Poor communication
-Among clinicians
-Between clinicians and patients
Limited Guidance & Proven Outcomes:
on medical & psychological tests, exams, follow-up
-Expert consensus (ASCO, COG)
-NCCN 2013 version 1.2013 (www.NCCN.org)
Need Continuity of Care
-Absence of locus of control or central
responsibility for follow-up care
-Patient centered outcomes targeting lowered
healthcare costs
17
“Why”: National Standards
QOPI –Initiatives Survivorship Quality Indicators in audit
regarding survivorship:
•Chemotherapy treatment summary provided to
patient within 3 months of chemotherapy end.
•Chemotherapy treatment summary provided or
communicated to practitioner(s) within 3 months of
chemotherapy end.
•Chemotherapy treatment summary process
completed within 3 months of chemotherapy end.
“Why”: National Standards for Survivorship
Care Plans by 2015
•Survivorship Care Plan is given to each
cancer patient upon completion of treatment.
•The Survivorship Care Plan contains a record
of care received, important disease
characteristics, and a written follow-up care
plan incorporating available and recognized
evidence-based standards
“How”: Survivorship “Chronic” Care
Model
Community Resources
& Policies
Non-profits, advocacy groups
Wellness communities
Government agencies
Self Management
& Decision Support
Health System
Delivery System
Design
Cancer Survivorship
Care
Clinical Information Systems
EHR, Care Plan
Informed
Activated
Patient
Productive
Interactions
Prepared
Proactive
Providers
Functional & Clinical Outcomes
Adapted from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2. Accessed July 25, 2011.
20
“How”: Oncology Patient Centered
Medical Home
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“How”: Elements of Cancer Survivorship
Post-Treatment Care
• Prevention: of new cancers & other late effects of
treatment; compliance with long-term therapy
• Surveillance: for cancer recurrence or 2nd cancers;
evaluate new symptoms
– screen for complications from cancer diagnosis & Tx
• Intervention: for consequences of cancer Rx
– manage complications from cancer diagnosis & Tx
• Coordination: between specialists & primary care
providers to ensure health needs are met
Institute of Medicine. From Cancer Patient to Cancer Survivor: Lost in Translation. Available at
http://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.
“How”: Development of a Survivorship
Care Plan
• Description of diagnosis
• Summary of treatment
– Therapies
– Contact information for each key provider
– MAJOR complications experienced
• Individual risk for late effects, second cancers
– Risk assessment and management strategies: Give orally & in writing
– Cancer risk
– Genetic Counseling for appropriate patients.
• Long-term monitoring for late effects
– Ongoing “To Do” List:
 Lifestyle strategies, adherence to oral therapies, etc…
Jacobs, L. Developing Models of Care for Adult Cancer Survivors.2006.
EPIC Treatment Summary and
Survivorship Care Plan
Template
Highlights:
• EPIC 2012 (enhanced workflow
with EPIC 2014)
• @___@ fields will auto-fill
• MUST use the problems list
• Data can be manually entered
or smart text
• Functionality lost for version
2010 users is limited to
discrete data points
• Meaningful use:
• Printed and/or
• Included in MyChart
• Templates in prodution:
• General (customizable)
• Breast
• GI
• GU
• Lung
• Adult Survivors of
Childhood Cancers
“How”: Barriers to Post-Treatment
Survivorship Care Planning
• How to implement a survivorship care plan?




Templates available
Time consuming
No/lack of reimbursement
Not easily configured with medical records
• What will we do with the plan?
– Will it really be used???
– JCO Dec, 2011: did not improve patient reported outcomes
– JOP Jan, 2012: not ready for prime time
• Unrealistic demands on limited staff
Grunfield et al., Evaluating Survivorship Care Plans: Results of a Randomized, Clinical Trial of Patients
With Breast Cancer, JCO Dec 2011.
27
“How”: Barriers to the Delivery of
Post-Treatment Survivorship Care
Limited experience on the best way to deliver
quality care
– Models of providing care are currently
being evaluated
– Will depend on resources available and
clinical expertise
 PCP’s are not prepared
 Oncologist want to maintain control & do
not communicate
 Patient are in limbo- who does what?
 Need ongoing professional education to
, JCO; 2006, 2011
bridge the gap between oncology, Grunfeld
Cheung, JCO; 2009, 2010
Del Giudice, JCO; 2009
specialty and primary care
Nekhlyudov, JCO; 2009
Potosky, J Gen Int Med, 2011
28
Opportunities for Continuing Education:
Survivorship Care Training
Web/Mobile Training Program
•
Cancer Survivorship Training for Healthcare Professionals
• CE and content matter expert developed curriculum
www.cancersurvivorshiptraining.com
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 STEP 1: SURVIVORSHIP WORKING GROUP
Developing a Survivorship Working Group helps to ensure a cohesive team
approach while communicating what survivorship care should look like for
your patients. Bringing together key stake holders from all departments
and collaborative practice settings is vital for a successful and productive
working group. (ie., clinicians, oncology nursing, cancer rehabilitation (PT,
OT, Speech), scheduling & registration, patient support services (psychooncology, social work, dietetics), administration, etc….).
Champions and Collaborators promote internal support for a cancer
survivorship program as well as identify essential multidisciplinary care
providers. Internal support is mandatory and without it a functioning and
effective program cannot be established.
Identify program leadership and who will be responsible for overseeing
the program development and initiation
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 STEP 2: NEEDS ASSESSMENT
• Implementing cancer survivorship care is
best begun with a needs assessment.
Patient, staff and provider input will be
instrumental while determining where gaps
of care may be occurring and where
appropriate modes of survivorship care are
already in place and working well.
• Include: Patients, Providers, Staff, and
Community
32
 STEP 3: DEFINE CANCER SURVIVORSHIP
SERVICES & PROGRAM GOALS
Utilize needs assessment data to identify
services gaps
Agree upon organizational definitions of
survivorship care across the cancer care
trajectory
Define Objectives and Goals
*Including meeting national standards
Develop a timeline working towards program
implementation
33
 Step 4: Implementation Strategy
• Determine program scope, cost, reimbursable
services and strategy for implementation
–
–
–
–
–
–
–
–
–
–
Identify potential barriers to implementation
Strategies for dismantling organizational barriers
Reimbursable vs. non-reimbursable
Connect with potential collaborators to define the program goals and illicit
support and formal collaboration
Define formal pathway for referral
Facilitate an in-service for providers and staff, encourage continuing
education with a focus on cancer survivorship
Patient scheduling system
Medical records documentation (integration in the electronic health record)
Development of collateral materials – website content, flyers, brochures,
newsletters, patient referral forms
Determine data points and how these will be collected (i.e., Excel or Access)
for timely reporting of outcomes
34
 STEP 5: IMPLEMENTATION OF
PROGRAMS & SERVICES
• A step-wise implementation can be more successful than
launching multiple services/programs simultaneously. Also,
determine services and programs that will result in good
outcomes and start there…beginning with success can set
your program off to a good start!
– Develop a timeline to keep development moving forward
– Expect barriers and obstacles
– Outreach
– Develop and utilize referral pathways and ensure
information flow goes both ways
– Ongoing data collection of outcome variables
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 STEP 6: PROGRAM ASSESSMENT
Ongoing program assessment is essential to success.
Monitoring the program’s effectiveness and making
modifications when necessary will only serve to improve
survivorship care. There is not one right way to deliver
quality survivorship care!
– Timely reporting to the working group, staff and
administration, community,
– Identify strategies that are working and those that
continue to meet obstacles,
– Meeting standards for national accreditation,
– Modify services /program when necessary.
36
“How” Does KUMC/KUCC Deliver
Survivorship Care?
37
Access to Services
Shortly After Diagnosis
Fertility
Preservation
Consult
Cancer
Genetics
Consult
Clinical
Trials
Survivorship
Care
•Nutrition
Consult
•Exercise
Evaluation
Quality of
Life
38
Examples of Post-Treatment Care
Diet and
Exercise
Interventions
Cancer
Rehab
Clinical
Trials
Survivorship
Care
Quality of
Life
CardioOncology
39
• Academic Medical Center & Hospital
• 9 Community Locations
• Midwest Cancer Alliance• Survivorship Clinic in Hays, KS
“A Modern Family”
Example: Prevention At Both Ends
of the Cancer Continuum
Breast Cancer
Prevention Center
Breast Imaging
& Treatment
Early Detection
Prevention
• Diet/Exercise
• Sun Exposure
• Alcohol
• Tobacco
Control
• Chemoprevention
•Cancer screening
Pap test
Mammogram
Fecal occult
blood test
Colonoscopy
Prostatespecific
antigen/Digital
rectal exam
•Awareness of
cancer risk, signs,
symptoms
Diagnosis
Survivorship
Treatment
• Long-term
follow-up/
surveillance
• Oncology/
surgery
consultation
• Chemotherapy
• Tumor staging
• Radiation
• Patient
counseling &
decision
making
• Symptom
management
• Rehabilitation
• Psychosocial
care
• Health
promotion
• Clinical trials
• Surgery
• Manage lateeffects
• Coping
• Prevention
•Informed
decision making
Continuum
Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.
41
Access to Empirically Driven
Services & Clinical Research
• Follow-up continuity clinic for patients
• Monitor risk of breast & related cancers
• Reproductive health (fertility) & sexuality
• Cardiac risk & evaluation
• Endocrine/menopausal symptoms
• Psychosocial/cognitive function
• Genetic counseling and testing
• Weight management: diet & exercise
• Cancer Rehab/PT
42
What Trends Do We See in First 262
Patients in BrCa Survivorship Clinic?
• Median age = 58 (34-86)
• 88% = Stage 1 & 2 BrCa
• 70% were ER+
• 49% were premenopausal at diagnosis
– Only 4% are premenopausal at entry into the
Survivorship clinic
• Average Weight Gain: 5 pounds
– Baseline BMI at diagnosis: 25.79
– BMI at time of 1st Survivorship Visit: 27.38
• Median # of minutes of exercise/week = 60-120
Klemp JR, Smith AK, Ranallo L, Godbey D, Khan QK, Fabian CJ. Baseline characteristics of women initiating
follow-up care in a newly developed breast cancer survivorship center. Cancer Res. 69, 2009.
KUMC Breast Cancer Survivorship Center
n=262
• Menopausal Symptoms:
– 58% Hot Flashes
– 56% Vaginal Dryness
– 46% NOT sexually active
• 92% had undergone a bone density analysis; 50% of
these women had low bone density and were on a
bisphosphonate
• A sizable proportion are not getting regular women’s
health screening tests from PCPs.
• Quality of life continues to be negatively impacted.
Patients report an interest in Energy Balance, Menopausal Symptom
Management, and concern over Heart and Bone Health
Examples of Common Concerns &
Survivorship Research Targets
• Long-term impact of cancer and its treatment
– CVD risk
• Diet and exercise
– Weight gain
– Loss of lean muscle
• Adherence with long-term therapy
– Side effects (High Dose Vitamin D)
– Cost
• Quality of life
– Cognitive dysfunction
– Fatigue
– Distress
– Depression
• Sexual health
45
“Being cancer-free is not the same as
being free of cancer”
Julia Rowland, PhD
Director, NCI Office of Cancer Survivorship
46
Resources
• IOM: Lost in Transition report from 2005
• IOM: Implementing the Survivorship Care
Planning, Workshop Report, 2006
• JCO Special Review Issue: Cancer Survivorship,
November 10, 2006
• M. Feuerstein (ed.) Handbook of Cancer
Survivorship, Springer, 2007
• Journal of Cancer Survivorship: New in 2007
• P.Ganz (ed.) Cancer Survivorship: Today and
Tomorrow, Springer, 2007
• www.cancersurvivorshiptraining.com
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