Jennifer Klemp, PhD, MPHJennifer Klemp, PhD, MPHAssistant ProfessorAssistant Professor

Director, Cancer SurvivorshipDirector, Cancer SurvivorshipUniversity of Kansas Cancer CenterUniversity of Kansas Cancer Center

March 2013March 2013

Creating and Implementing a Survivorship Program in Your Practice

Disclosure

Name of Company Founder/CEO Speakers Bureau

Cancer Survivorship Training, Inc

√

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 long-term 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

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“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.

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NCCN: National Coalition for Cancer Survivorshiphttp://www.canceradvocacy.org/

Cancer Control Continuum

Prevention

•Diet/Exercise

•Sun Exposure

•Alcohol

•Tobacco Control

•Chemo-prevention

Early Detection

•Cancer screeningPap testMammogramPSA/DREFecal occult blood testColonoscopy•Awareness of cancer risk, signs, symptoms

Diagnosis•Oncology/ surgery consultation

•Tumor staging

•Patient counseling & decision making

•Clinical trials

•Informed Decision Making

Treatment

•Chemotherapy

•Surgery

•Radiation

•Symptom management

•Psychosocial

•Maintenance therapy

Survivorship•Long-term follow-up/ surveillance

•Manage late-effects

•Rehabilitation

•Coping

•Health promotion

•Prevention

•Palliative Care

Phases of Cancer Care

Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

End of Life

•Support patient & family

•Hospice

•Informed decision making

“Who”: Growing Number of Cancer Survivors?

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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.

“Who”: Age of Cancer SurvivorsEstimated 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)

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Mental Health

Physical Therapy/

Occupational Therapy

Neurology/ Neuropsychology

Endocrinology

Cardiology

Gynecology/UrologySexual Healht/Fertility

Pulmonary

PainManagement

“Who” Delivers Survivorship CareSurvivorship care is by nature multidisciplinary

and ideally provided using a team approach

IOM, 2006

Specialty/Primary Care

“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

Fatigue, endocrine symptoms, infertility, neuropathy, cognitive function, heart, kidney, and liver problems

• SurgeryScars, chronic pain

• Radiation TherapyFatigue, skin sensitivity

• Chemotherapy– 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

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“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

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“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://www.nap.edu/catalog.php?record_id=11468. Accessed July 25, 2011.

Diagnosis and staging

Treatment with intent to cure

Cancer-freesurvival

Recurrence/second cancer

Death

Treatment failure

Start Here

Delivery of survivorship education & preventive strategies

Delivery of post-treatment survivorship care

Delivery of survivorship care in the advanced cancer setting

Managedchronic or intermittent

disease

Palliative treatment

“Where” Do Cancer Survivorship Receive their Care?

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• 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

• 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.

“Where” Elements of Shared Care Delivery

“Why”: Recommended by National Experts

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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 Coordinated

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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

“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

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Health System

Clinical Information SystemsEHR, Care Plan

Self Management & Decision Support

InformedActivated

Patient

PreparedProactiveProviders

Community Resources& Policies

Non-profits, advocacy groupsWellness communitiesGovernment agencies

ProductiveInteractions

Functional & Clinical Outcomes

Delivery System Design

Cancer SurvivorshipCare

Adapted from: http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2. Accessed July 25, 2011.

“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

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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 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 bridge the

gap between oncology, specialty and primary care

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Grunfeld , JCO; 2006, 2011Cheung, JCO; 2009, 2010Del Giudice, JCO; 2009Nekhlyudov, JCO; 2009Potosky, J Gen Int Med, 2011

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

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 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 Community

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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

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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

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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.

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“How” Does KUMC/KUCC Deliver Survivorship Care?

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Access to Services Shortly After Diagnosis

Survivorship Care

Fertility Preservation

Consult

•Nutrition Consult

•Exercise Evaluation

Quality of Life

Cancer Genetics Consult

Clinical Trials

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Examples of Post-Treatment Care

Survivorship Care

Diet and Exercise

Interventions

Cardio-OncologyQuality of

Life

Clinical Trials

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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 Continuum

Prevention

•Diet/Exercise

•Sun Exposure

•Alcohol

•Tobacco Control

•Chemo-prevention

Early Detection

•Cancer screeningPap testMammogramFecal occult blood testColonoscopyProstate-specific antigen/Digital rectal exam

•Awareness of cancer risk, signs, symptoms

•Informed decision making

Diagnosis

•Oncology/ surgery consultation

•Tumor staging

•Patient counseling & decision making

•Clinical trials

Treatment

•Chemotherapy

•Surgery

•Radiation

•Symptom management

•Psychosocial care

Survivorship

•Long-term follow-up/ surveillance

•Manage late-effects

•Rehabilitation

•Coping

•Health promotion

•Prevention

Continuum

Breast Imaging & Treatment

Breast Cancer Prevention Center

41Adapted from: http://cancercontrol.cancer.gov/od/continuum.html. Accessed July 25, 2011.

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

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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 = 60-120Klemp 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

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“Being cancer-free is not the same as being free of cancer”

Julia Rowland, PhD

Director, NCI Office of Cancer Survivorship

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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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