Young and Strong The Program for Young Women

with Breast Cancer at Dana-Farber Cancer Institute:Current Status and Future Plans

Kim Sprunck-Harrild, MSW, MPHProgram Manager

Ann H. Partridge, MD, MPHProgram Director

December 3, 2014

Young women with breast cancer: a vulnerable population

Disease and Treatment Higher stage, aggressive biology Aggressive treatment

Psychosocial distress Role functioning Isolation Lack of information

Fertility 30-60% are concerned about this topic at diagnosis

Genetics Increased risk of a genetic risk factor for cancer

Gaps in Care

Even experts have hard time keeping up on information and nuances of care for young women

Attention to supportive care and survivorship issues have been repeatedly found deficient in young patients: Fertility Menopausal concerns Body image Sexual functioning Genetic risk Psychosocial issues

Program for Young Women with Breast Cancer

• Established in 2005 to address the critical issues facing young women (ages 42 and younger) and improve their care and outcomes

• To date: served in our clinic over 2500 young patients

Young and Strong Program Leadership Team

Ann Partridge, MD, MPH Program Director: Young and

Strong Medical Oncologist, Dana-Farber

Cancer Institute Associate Professor in Medicine,

Harvard Medical School

Eric Winer, MD Chief, Division of Women’s Cancers Director, Breast Oncology Program Medical Oncologist, Dana-Farber

Cancer Institute Professor in Medicine, Harvard

Medical School

Meredith Faggen, MD Director, Medical Oncology Dana-Farber/Brigham and Women’s

Cancer Center at South Shore Hospital

Kim Sprunck-Harrild, MSW, MPH Young and Strong Program Manager

Juliana Lonardo, BA Young and Strong Network Program

Coordinator

Jennifer McNutt, BA Young and Strong Main Campus

Program Coordinator

Team also includes numerous additional clinical and research faculty and staff as well as patient advisors (an “umbrella” program)

A comprehensive and integrated program focused on young women

Clinical Care

Research

Education(both patient and provider)

(Partridge et al, JOP 2013)

Focus on the clinical and patient education/support components

Welcome Letter

Current Newsletter

Distributed bi-annually

Current newsletter…continued

Clinical research to move beyond our region with “virtual” program/RCT

Young and Strong RCT Schema

YWI

For providers

For patients

PAI

For providers

For patientsRandomizeby practice

Outcome Measurement (by patient participant)

•Baseline survey- completed at enrollment

•Follow-up patient surveys at 3, 6, and 12 months after enrollment visit

•Medical oncology record request at 6 months after enrollment visit

54 sites-14 academic

40 community

CDC Initiative Aims• Expand target population• Increase age target to 44 and younger• Translate materials into Spanish and another language• Extend services to patients treated beyond DFCI main campus

• Expand services• Increase and target efforts to educate providers, tumor boards• Increase and target young survivors for survivorship

navigation

• Increase collaboration • Develop national teleconference program for patients along

with other CDC- funded programs and others

• Seek advice and evaluate rigorously

CDC Initiative Aims

• Expand target population• to include women 44 years old and younger with breast

cancer diagnosis at all locations (previously 42 and under at main campus)

• Expand target population to include DF/BWCC satellite and affiliate sites in Massachusetts, Connecticut and New Hampshire

8 Subsidiary Affiliate Sites, 4 Satellite locations, 1 Managed Contract Affiliate

Conduct Needs Assessment of target areas Refine patient and provider materials, tools and

websites to fit target area needs, including translation of materials into Spanish and another language TBD

Expand availability of structured support services to each satellite and affiliate location Training of providers and staff

Initial educational session and orientation to Young and Strong program by Dr. Partridge at each site

Expert presentations to sites for continued education and awareness to providers and staff

In later years, planned tumor boards accessible by teleconference for all sites

CDC Initiative Aims

CDC Initiative Aims, cont.

Expand availability of structured support services to each satellite and affiliate location (cont.) Direct support to patients via direct contact with

Network Coordinator Provision of educational materials and information

including Young and Strong brochures, booklets and biannual newsletter

Access to and growth of telephone support groups, annual young women’s forum, regular young women’s evenings and workshops, peer mentoring programs

Referrals as needed to genetic counseling, fertility specialists, social work/psychological counseling, plastic surgery, sexual health, exercise and nutrition, integrative therapies, survivorship programs and services, etc.

CDC Initiative Aims, cont.

Develop and implement young women’s monthly lecture series accessible via teleconference In partnership with programs and organizations

supported by and external to the CDC i.e. LBBC, Sharsharet, YSC, Bright Pink, Komen, etc.

Survivorship Navigation Plan Refer young women for Survivorship Consultation

Receive treatment summary and survivorship care plan, promoting long-term adherence with endocrine therapy, follow-up screening and optimal health behaviors among breast cancer survivors in an effort to meet HP 2020 goals

Treatment Summaries

and Survivorshi

p Care Plans-

Tailored to Young

Women

Thank you! Questions?