Young and Strong The Program for Young Women with Breast Cancer at Dana-Farber Cancer Institute: Current Status and Future Plans

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Young and Strong The Program for Young Women
with Breast Cancer at Dana-Farber Cancer
InstituteCurrent Status and Future Plans

• Kim Sprunck-Harrild, MSW, MPH
• Program Manager
• Ann H. Partridge, MD, MPH
• Program Director
• December 3, 2014

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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

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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

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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

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Young and Strong Program Leadership Team

• 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)

• 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 Womens 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 Womens Cancer Center at
  South Shore Hospital

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A comprehensive and integrated program focused on
young women
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Focus on the clinical and patient
education/support components
(Partridge et al, JOP 2013)
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Welcome Letter
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Current Newsletter

• Distributed bi-annually

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• Current newslettercontinued

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Clinical research to move beyond our region with
virtual program/RCT
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Young and Strong RCT Schema
54 sites- 14 academic 40 community
YWI For providers For patients
PAI For providers For patients
Randomizeby 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

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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

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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

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CDC Initiative Aims

• 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

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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 womens forum, regular young womens
  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.

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CDC Initiative Aims, cont.

• Develop and implement young womens 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

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Treatment Summaries and Survivorship Care Plans-
Tailored to Young Women
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Thank you! Questions?