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, MPH Program Manager Ann H. Partridge, MD, MPH Program 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 patients Randomize by 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 Survivorship Care Plans- Tailored to Young Women

Thank you! Questions?