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?
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