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Jennifer Klemp, PhD, MPH Assistant Professor Director, Cancer Survivorship University of Kansas Cancer Center March 2013


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Title: Jennifer Klemp, PhD, MPH Assistant Professor Director, Cancer Survivorship University of Kansas Cancer Center March 2013

Creating and Implementing a Survivorship Program
in Your Practice
  • Jennifer Klemp, PhD, MPHAssistant
    ProfessorDirector, Cancer SurvivorshipUniversity
    of Kansas Cancer CenterMarch 2013

Name of Company Founder/CEO Speakers Bureau
Cancer Survivorship Training, Inc v
Novartis Pharmaceuticals Company v
Pfizer Oncology v
  • This course will healthcare providers
  • Demands of Cancer Survivorship
  • Who, What, When, Where, Why, How
  • Recognize the majority of cancer survivors
    experience long-term and late effects of their
  • 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

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//
Cancer Control Continuum
  • Diagnosis
  • Oncology/ surgery consultation
  • Tumor staging
  • Patient counseling decision making
  • Clinical trials
  • Informed Decision Making
  • Survivorship
  • Long-term follow-up/ surveillance
  • Manage late-effects
  • Rehabilitation
  • Coping
  • Health promotion
  • Prevention
  • Palliative Care
  • Early Detection
  • Cancer screening
  • Pap test
  • Mammogram
  • Fecal occult blood test
  • Colonoscopy
  • Awareness of
  • cancer risk, signs, symptoms
  • Treatment
  • Chemotherapy
  • Surgery
  • Radiation
  • Symptom management
  • Psychosocial
  • Maintenance therapy
  • Prevention
  • Diet/Exercise
  • Sun Exposure
  • Alcohol
  • Tobacco Control
  • Chemo-prevention
  • End of
  • Life
  • Support patient family
  • Hospice
  • Informed decision making

Phases of Cancer Care
Adapted from http//
ontinuum.html. Accessed July 25, 2011.
Who Growing Number of Cancer Survivors?
Estimated 18 million by 2020
valence.htmlsurvivor http//
lth/jan2011/nci-12.htm. Accessed July 25, 2011.
Who Age of Cancer Survivors Estimated Number
of Persons Alive in the U.S. Diagnosed With
Cancer by Current Age
Primary Cases Only, N11.4M survivors)
Who Estimated Number of Cancer Survivors in
the U.S. based on November 2009 SEER data by
Site (Invasive/1st Primary Cases Only, N11.4M
Who Delivers Survivorship CareSurvivorship
care is by nature multidisciplinary and ideally
provided using a team approach
Mental Health
Specialty/Primary Care
Physical Therapy/Occupational Therapy
Pain Management
Neurology/ Neuropsychology
Gynecology/Urology Sexual Healht/Fertility
IOM, 2006
What Survivorship Care is a Dynamic Process
Social/Well Being
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
  • Fatigue, endocrine symptoms, infertility,
    neuropathy, cognitive function, heart, kidney,
    and liver problems
  • Surgery
  • Scars, chronic pain
  • Radiation Therapy
  • Fatigue, skin sensitivity
  • Chemotherapy
  • 2nd primary cancers, cataracts, infertility,
    liver problems, lung disease, osteoporosis/endocri
    ne 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

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

When Across the Continuum of Care- Modified
Cancer Care Trajectory
Institute of Medicine. From Cancer Patient to
Cancer Survivor Lost in Translation. Available
at http//
Accessed July 25, 2011.
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

Where Elements of Shared Care Delivery
  • Care shared by two or more clinicians of
    different specialties (ie. Oncology and Primary
  • 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
  • Communication channels
  • Contact information for oncology physicians and
  • Active patient involvement
  • Encouraged to contact primary care physician with
  • Provided with the information given to the
    primary care physician

Renders et al Diabet Med 20846-852, 2003
Jones et al Am J Kidney Dis 47 103-114, 2006
Neilsen et al Qual Saf Health Care 12(4)
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  
Why Current Delivery is Fragmented, Poorly
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
Need Continuity of Care -Absence of locus of
control or central responsibility for follow-up
care -Patient centered outcomes targeting lowered
healthcare costs
Why National StandardsQOPI 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
Delivery System Design Cancer Survivorship Care
Self Management Decision Support
Health System Clinical Information Systems EHR,
Care Plan
Informed Activated Patient
Prepared Proactive Providers
Productive Interactions
Functional Clinical Outcomes
Adapted from http//
index.php?pThe_Chronic_Care_Models2. Accessed
July 25, 2011.
How Oncology Patient Centered Medical Home
How Elements of Cancer Survivorship
Post-Treatment Care
  • Prevention of new cancers other late effects
    of treatment compliance with long-term
  • Surveillance for cancer recurrence or 2nd
    cancers evaluate new symptoms
  • screen for complications from cancer diagnosis
  • 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//
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
  • Highlights
  • EPIC 2012 (enhanced workflow with EPIC 2014)
  • _at_____at_ 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

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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
  • 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.
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
  • Will depend on resources available and clinical
  • PCPs are not prepared
  • Oncologist want to maintain control do not
  • Patient are in limbo- who does what?
  • Need ongoing professional education to bridge the
    gap between oncology, specialty and primary care

Grunfeld , JCO 2006, 2011 Cheung, JCO 2009,
2010 Del Giudice, JCO 2009 Nekhlyudov, JCO
2009 Potosky, J Gen Int Med, 2011
Opportunities for Continuing Education
Survivorship Care Training
  • Web/Mobile Training Program
  • Cancer Survivorship Training for Healthcare
  • CE and content matter expert developed curriculum

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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
(psycho-oncology, 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
? 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

? 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
  • ?Define Objectives and Goals
  • Including meeting national standards
  • ?Develop a timeline working towards program

? Step 4 Implementation Strategy 
  • Determine program scope, cost, reimbursable
    services and strategy for implementation
  • Identify potential barriers to implementation
  • Strategies for dismantling organizational
  • Reimbursable vs. non-reimbursable
  • Connect with potential collaborators to define
    the program goals and illicit support and formal
  • 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

? 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 therebeginning with success can set your
    program off to a good start!
  • Develop a timeline to keep development moving
  • Expect barriers and obstacles
  • Outreach
  • Develop and utilize referral pathways and ensure
    information flow goes both ways
  • Ongoing data collection of outcome variables

? Step 6 Program Assessment
  • Ongoing program assessment is essential to
    success. Monitoring the programs effectiveness
    and making modifications when necessary will only
    serve to improve survivorship care. There is not
    one right way to deliver quality survivorship
  • 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.

How Does KUMC/KUCC Deliver Survivorship Care?
Access to Services Shortly After Diagnosis
Clinical Trials
Examples of Post-Treatment Care
Cancer Rehab
  • 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
Breast Imaging Treatment
Breast Cancer Prevention Center
  • Early Detection
  • Cancer screening
  • Pap test
  • Mammogram
  • Fecal occult blood test
  • Colonoscopy
  • Prostate-specific antigen/Digital rectal exam
  • Awareness of cancer risk, signs, symptoms
  • Informed decision making
  • Survivorship
  • Long-term follow-up/ surveillance
  • Manage late-effects
  • Rehabilitation
  • Coping
  • Health promotion
  • Prevention
  • Diagnosis
  • Oncology/ surgery consultation
  • Tumor staging
  • Patient counseling decision making
  • Clinical trials
  • Prevention
  • Diet/Exercise
  • Sun Exposure
  • Alcohol
  • Tobacco Control
  • Chemo-prevention
  • Treatment
  • Chemotherapy
  • Surgery
  • Radiation
  • Symptom management
  • Psychosocial care

Adapted from http//
ontinuum.html. Accessed July 25, 2011.
Access to Empirically Driven Services Clinical
  • 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

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 n262
  • 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
  • A sizable proportion are not getting regular
    womens health screening tests from PCPs.
  • Quality of life continues to be negatively

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

  • Being cancer-free is not the same as being free
    of cancer
  • Julia Rowland, PhD
  • Director, NCI Office of Cancer Survivorship

  • 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