Jennifer Ivanovich, MS

Washington University School of MedicineSt. Louis, MO

Start With Why by Simon Sinek

WHY

HOW

WHAT

The Golden Circle

WHYWe believe in challenging the status quo to bring about positive change for young adults with cancer.

HOWThe way we will bring about positive change is by our persistent pursuit of research, targeted education, support and advocacy with young survivors engaged as our most essential partners.

WHATWe build diverse approaches to reach young adults and lead clinical research focused on their aggressive disease.

Vision, Mission and Operations

Research

Awareness Support

A B

A B

A B A B

A B

A B

Education

WHY

HOW

WHAT

Distinguishing factors among YBCS

Women from families with

hereditary cancer

Most young women have

no family breast cancer

history

Dia

gnos

is

Trea

tmen

t

Surv

ivor

ship

Pre

-dia

gnos

is

Aggressive disease

Lack of treatment data

on young women

Shift in genetic testing

practices

Limited decision

making skills

Fertility issues

Increase in rate of stage IV at

diagnosis

Cancer continuum

Delayed diagnosis due

to age

Less likely to have health insurance coverage

Longest time to live with

treatment side effects

Highest risk for second

malignancy

Highest recurrence risk

Greaterlikelihood of

decreased quality of life

Lowest survival rate

Death due to other causes – e.g. diabetes, old age

Premature death to poor health, treatment related effects, e.g. cardiomyopathy

Death due to 2nd malignancye.g. ovarian cancer

Cognitive / memory changes

Metastatic disease

Dea

th

Personal demands (e.g, work, family)

affected treatment

completion

Initial Logic Model – September 2011

Logic model for YWBCP

Initial needs assessment – March 2012

• The majority of women currently engaged in our program have completed their primary cancer treatment.

• Minority young survivors and women with limited financial resources are not adequately represented.

• Young women wish to connect with other young survivors for peer support and information.

• Targeted support programming for women with metastatic breast cancer does not currently exist in St. Louis region.

• Young women desire targeted information that is easy to manage.

• Young survivors stated it was difficult to find targeted programs.

• There is a lack of support and education programming for young adults with cancer in St. Louis region.

Regional program with national outreach

Engagement- 2001, Support and education programming initiated

- 2005, Genetics research program implemented

- 2011, CDC funding for support & education programming

- 2013, Genome communication research implemented

Outreach- 1,500 survivors in St. Louis region

- 3,100 survivors throughout the United States interested in our research program

- 2,200 young survivors have participated in genetics study

- 1,925 family members have participated in genetics study

Outcomes – Engagement and Outreach

Outcomes – Coach• Coach Program

– Program Coordinator meets with young women newly diagnosed in surgery and oncology clinics

– Program materials provided– Information added to electronic and print distribution list– Significant impact on outreach

• Met with over 310 young women newly diagnosed• Connect with women early in treatment process• Increase diversity of women reached

• Peer Network– Capitalize on survivor “good will” and knowledge– Train young survivors to serve as a peer mentor to another young survivor– Training focused on confidentiality and active listening

Outcomes – Support• Monthly support programming – since October 2011

– General format usually consists of speaker presentation with time for networking– Topics identified by young survivors. Examples include,

• Fertility --- Sexuality --- Genetics --- Mindfulness --- Acupuncture • Survivors in their 20 & 30s--- Restorative yoga --- Healthy nutrition

• Targeted support programming- Bi-weekly structured psychosocial support program for young women with

metastatic breast cancer, Fall 2012- Young women with metastatic breast cancer symposium

- Held March 2014- Targeted programming provides opportunity to address heterogeneity

- Siteman Cancer Center Counseling Services- Referrals to psychologists for free psychological counseling

Outcomes – Practical Support • Cancer Survivor Resource Guide

– AYA cancer support, general cancer support,

creative arts, employment and insurance,

environmental, family support, financial,

general health, grief support, hospice

transportation & lodging

Outcomes – Educate• Annual education symposium: 2012, 2013

– Next symposium is set for September 13, 2014– Anticipate 100 young survivors in attendance

• Together magazine– Our young survivor magazine– New editions published in 2012, 2013, 2014– Last edition mailed directly to ~ 4,000 young survivors

• Family history guide– Marketed directly to ~4,000 young survivors– Currently in the process of recording videos regarding

genetic testing

• The woman is stronger than the disease– Our young survivor journal– Continued distribution locally and nationally

e.g. Sister Network in Washington DC

Outcomes – Transition• Young Adult Cancer Survivor Exercise Program

– Weekly strength and cardio exercise program

– Began September 2012

– Additional exercise groups have formed • running, tennis, pickleball

• Creative Expression Program– Monthly programming held in 2012 / 2013

– INSIDE OUT: CELEBRATING CANCER SURIVORSHIP

Outcomes – Communication

• YWBCP website: ywbcp.wustl.edu

– Google analytics

• Monthly e-newsletter– 600 receive e-newsletter– VerticalResponse.com

• Facebook– Page and 2 closed groups

• Twitter

• Cancer center information center & digital messaging boards

• Clinical engagement

• Professional and community presentations

• Local press– St. Louis Post Dispatch article June 2013

Sustainability• Support of Division Chief – Graham Colditz, MD• Local grant funding

– Barnes-Jewish Hospital Foundation– St. Louis Men’s Group Against Cancer– Boeing St. Louis – Employee Community Funding

• Local fundraising efforts– Celebrate Events … Celebrate Fitness, Celebrate Tennis, Celebrate Style– The Pink Party

• Philanthropy– Local and national philanthropic efforts

• Challenges / Opportunities– National grants necessary to expand staff and enhance services– Limited survivorship programming and no young adult cancer clinic at our cancer

center

Some Lessons Learned• A sustainable infrastructure requires:

– Flexibility ---- Creativity ---- Persistence

– Solid grant management

• A flexible program meets women in their “space”– Women with limited financial resources

– Metastatic disease

• A young adult cancer program must work “outside the box”– Creative arts programming

– Exercise program

• A young cancer survivor program achieves greater good by building stronger, diverse partnerships– “Passive” and “Active” partners

– Other AYA cancer program partners

Moving forward

INPUTS ACTIVITIES IMMEDIATE OUTCOMES

INTERMEDIATE OUTCOMES

LONGER TERM OUTCOMES

Navigate

Support

Educate

Transition

Enhanced skill development

Increased emotional support

Increased exposure to information

Increased physical activity

Improved personal health advocate

Enhanced cancer Community

Improved knowledge

Weight loss/maintenance

Life- long engagement

Increased preventive behaviors

Improved overall emotional wellbeing

Commitment to healthy behaviors

Increased screening adherence

Expert program team

Established infrastructure

NCI -Comprehensive Cancer Center

Young Survivors

WUSM –Genome Institute

YWBCP local advisory board

YWBCP national survivor advisors

Regional & national partners

CDC

EnhanceIncreased awareness

Stronger partnerships

Sustained program activities

Prevention of new cancers

Additional social needs support

Funding partners

Informed utilization of medical & support

services

ULTIMATE OUTCOMES

Improved physical health

Enhanced quality of life

Decreased mortality

Increased utilization of

services

Program assessment

Thank You!Centers For Disease Control and Prevention

– Special thanks to Mary Kay Solera and Vicky D’Alfonzo

– Temeika Fairley, Angela Moore, Cynthia Corsino, Tiffani Mulder, Annie Brayboy, Vivian Walker, Kathy Raible

DP11-1111 grantees– Mindy Carpenter, Anyta Parido, Lindsay Herring, Carrie Cantrell – John C.

Lincoln Health Foundation

– Arin Ahlum Hanson, Janine Guglielmino – Living Beyond Breast Cancer

– Donna Williams, Helen McMillan – Louisiana State University

– Jennifer Thompson, Danna Averbook, Rochelle Shoretz - Sharsheret

– Patty Ganz and Vickie Williams - University of California

– Larry Marks, Adrian Gerstel – University of North Carolina

Local and National Partners

Special thanks to our young breast cancer survivors!

The Young Women’s Breast Cancer Program

Kim Selig, MSW -- Program Coordinator314-747-7156seligk@wudosis.wustl.edu

Jennifer Ivanovich, MS -- Program Director314-454-5076ivanovichj@wudosis.wustl.edu

Paul Goodfellow, PhD – Research DirectorThe Ohio State University

ywbcp.wustl.edu

Washington University School of MedicineBox 8100; Siteman Cancer Center660 S. Euclid Ave ; St. Louis, MO 63110