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OR68 Meeting the diverse but unique needs of young women diagnosed with breast cancer: a toolkit approach
The Breast 23S1 (2014) S24–S30
Contents lists available at ScienceDirect
The Breast journal homepage: www.elsevier.com/brst
Advocacy and Nursing OR68 Meeting the diverse but unique needs of young women diagnosed with breast cancer: a toolkit approach M. McCann1 , J. Rowe2 , M. Esser1 , J. Merschdorf1 , S. Lewis1 . 1 Young Survival Coalition, Department of Programs, New York, NY, USA, 2 Young Survival Coalition, Department of Programs, Tucker, GA, USA Background: Each year approximately 13,000 women under the age of 40 are diagnosed with breast cancer in the US. There are 250,000 breast cancer survivors living in the US today who were diagnosed under the age of 40. Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Within the population of young breast cancer survivors is a diversity of needs and experiences ranging from those who are newly diagnosed, to those who are posttreatment, a long-term survivor, or living with metastatic disease. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. Our navigator resource series provides a “toolkit” to meet the needs of each of these categories of young women. Methods: We surveyed young women newly diagnosed with breast cancer (308), living with metastatic disease (300), young survivors post-treatment (268), and long-term, five years out from diagnosis, (461) to determine their unique needs, concerns, and information requirements. We also utilized focus groups of these patient populations and workgroups composed of survey participants and psychosocial professionals to aid in drafting and refining our toolkit. Results: Based upon the survey results, as well as work group and focus group input, YSC developed four tools to help a young woman cope with her disease. The Newly Diagnosed Navigator provides a young woman the information and tools to confront her disease, like a glossary and lists of questions to ask her doctors. The Metastatic Navigator helps a young woman understand her diagnosis, discusses treatment options, and provides tips on practical matters and maintaining quality of life. The Post-Treatment Navigator provides support for the young woman’s adjustment to life after treatment and breast cancer. Finally, the Long-Term Survivor Navigator discusses issues of significance to this population including long-term side effects and fear of recurrence. Conclusions: Young breast cancer patients and survivors have varied needs, which must be addressed. YSC meets those unique needs through its “toolkit” of navigators. PO69 Breast cancer in young women in Canada – a needs assessment S. Ginsberg1 , A. Braude2 . 1 Rethink Breast Cancer, Department of Support & Education, Toronto, Canada, 2 Rethink Breast Cancer, Department of Communication & PR, Toronto, Canada Rethink Breast Cancer’s Needs Assessment of young women with breast cancer is the first national quantitative data on the experience of breast cancer for young women in Canada, from diagnosis, through treatment and survivorship. The objective for the data is to provide critical evidence based information and benchmarks to 0960-9776/ $ – see front matter © 2014 Elsevier Ltd. All rights reserved.
stakeholders in the breast cancer field around the challenges facing the young breast cancer patient population to help improve patient education, advocacy and support programs for young women with breast cancer. Methods: An online bilingual (English and French) qualitative survey consisting of 88 questions. The survey was open to women who had a breast cancer diagnosis (first time or recurrence) in the previous 6 years. 574 women responded to the survey. 372 (65%) were ages 20–45, 202 (35%) were ages 46–69. The results were analyzed to look at significant differences in the answers from younger and older respondents. The Needs Assessment Report was published in March 2013. Results: While the impact of breast cancer is stressful for women of all ages, the data from our Needs Assessment shows that younger women are particularly vulnerable to the negative psychosocial effects of the disease. We attribute two key factors to younger women having a more difficult breast cancer experience than older women: aggressiveness of cancer treatment and life-stage. The data shows that despite a growing array of peer support based interventions and community resources available to young women, many of the concerns of young breast cancer patients are still not being met. PO70 About Her – building community and creating dialogue through story telling and film S. Ginsberg1 , A. Braude2 . 1 Rethink Breast Cancer, Department of Support & Education, Toronto, Canada, 2 Rethink Breast Cancer, Department of Communications & PR, Toronto, Canada Produced by Rethink Breast Cancer, About Her tells the intimate story of nine young Canadian women facing life in the wake of their HER2+ breast cancer diagnosis. Filled with humour and candour, each woman’s unique experience is woven together into a shared portrait of each painful and hopeful chapter of discovery, treatment and recovery, punctuated by excerpts from one women’s acclaimed blog voiced by Kim Cattrall. The 60 minute documentary has been well received by all audiences, and holds special interest to those impacted by breast cancer, cancer in a young person, as well as the health care community who interact with cancer patients. It aims to inspire women with breast cancer, their families and health care providers to share their experiences and connect with others. About Her premiered at the Breast Fest Film Festival in Toronto, and has screened at the Los Angeles Women’s International Film Festival; the Women’s International Film & Arts Festival in South Florida. It was broadcast on national television in Canada and Australia, and won the Donald Brittain Award for Best Social/Political Documentary at the 2013 Canadian Screen Awards. The film can be screened as a short or in its full 60 minute version. Themes in the film will be explored in more detail afterward through a panel discussion or Q&A. Attendees will leave with a new understanding of the unique challenges faced by young women with breast cancer around the issues of isolation, sexuality, fertility, parenting, and careers. http:// rethinkbreastcancer.com/our-work/about-her/
Contents lists available at ScienceDirect
The Breast journal homepage: www.elsevier.com/brst
Advocacy and Nursing OR68 Meeting the diverse but unique needs of young women diagnosed with breast cancer: a toolkit approach M. McCann1 , J. Rowe2 , M. Esser1 , J. Merschdorf1 , S. Lewis1 . 1 Young Survival Coalition, Department of Programs, New York, NY, USA, 2 Young Survival Coalition, Department of Programs, Tucker, GA, USA Background: Each year approximately 13,000 women under the age of 40 are diagnosed with breast cancer in the US. There are 250,000 breast cancer survivors living in the US today who were diagnosed under the age of 40. Compared to older women, young women generally face more aggressive cancers, lower survival rates, and unique psychosocial concerns. Within the population of young breast cancer survivors is a diversity of needs and experiences ranging from those who are newly diagnosed, to those who are posttreatment, a long-term survivor, or living with metastatic disease. Young Survival Coalition (YSC) is the premier global organization dedicated to the critical issues unique to young women and breast cancer. Our navigator resource series provides a “toolkit” to meet the needs of each of these categories of young women. Methods: We surveyed young women newly diagnosed with breast cancer (308), living with metastatic disease (300), young survivors post-treatment (268), and long-term, five years out from diagnosis, (461) to determine their unique needs, concerns, and information requirements. We also utilized focus groups of these patient populations and workgroups composed of survey participants and psychosocial professionals to aid in drafting and refining our toolkit. Results: Based upon the survey results, as well as work group and focus group input, YSC developed four tools to help a young woman cope with her disease. The Newly Diagnosed Navigator provides a young woman the information and tools to confront her disease, like a glossary and lists of questions to ask her doctors. The Metastatic Navigator helps a young woman understand her diagnosis, discusses treatment options, and provides tips on practical matters and maintaining quality of life. The Post-Treatment Navigator provides support for the young woman’s adjustment to life after treatment and breast cancer. Finally, the Long-Term Survivor Navigator discusses issues of significance to this population including long-term side effects and fear of recurrence. Conclusions: Young breast cancer patients and survivors have varied needs, which must be addressed. YSC meets those unique needs through its “toolkit” of navigators. PO69 Breast cancer in young women in Canada – a needs assessment S. Ginsberg1 , A. Braude2 . 1 Rethink Breast Cancer, Department of Support & Education, Toronto, Canada, 2 Rethink Breast Cancer, Department of Communication & PR, Toronto, Canada Rethink Breast Cancer’s Needs Assessment of young women with breast cancer is the first national quantitative data on the experience of breast cancer for young women in Canada, from diagnosis, through treatment and survivorship. The objective for the data is to provide critical evidence based information and benchmarks to 0960-9776/ $ – see front matter © 2014 Elsevier Ltd. All rights reserved.
stakeholders in the breast cancer field around the challenges facing the young breast cancer patient population to help improve patient education, advocacy and support programs for young women with breast cancer. Methods: An online bilingual (English and French) qualitative survey consisting of 88 questions. The survey was open to women who had a breast cancer diagnosis (first time or recurrence) in the previous 6 years. 574 women responded to the survey. 372 (65%) were ages 20–45, 202 (35%) were ages 46–69. The results were analyzed to look at significant differences in the answers from younger and older respondents. The Needs Assessment Report was published in March 2013. Results: While the impact of breast cancer is stressful for women of all ages, the data from our Needs Assessment shows that younger women are particularly vulnerable to the negative psychosocial effects of the disease. We attribute two key factors to younger women having a more difficult breast cancer experience than older women: aggressiveness of cancer treatment and life-stage. The data shows that despite a growing array of peer support based interventions and community resources available to young women, many of the concerns of young breast cancer patients are still not being met. PO70 About Her – building community and creating dialogue through story telling and film S. Ginsberg1 , A. Braude2 . 1 Rethink Breast Cancer, Department of Support & Education, Toronto, Canada, 2 Rethink Breast Cancer, Department of Communications & PR, Toronto, Canada Produced by Rethink Breast Cancer, About Her tells the intimate story of nine young Canadian women facing life in the wake of their HER2+ breast cancer diagnosis. Filled with humour and candour, each woman’s unique experience is woven together into a shared portrait of each painful and hopeful chapter of discovery, treatment and recovery, punctuated by excerpts from one women’s acclaimed blog voiced by Kim Cattrall. The 60 minute documentary has been well received by all audiences, and holds special interest to those impacted by breast cancer, cancer in a young person, as well as the health care community who interact with cancer patients. It aims to inspire women with breast cancer, their families and health care providers to share their experiences and connect with others. About Her premiered at the Breast Fest Film Festival in Toronto, and has screened at the Los Angeles Women’s International Film Festival; the Women’s International Film & Arts Festival in South Florida. It was broadcast on national television in Canada and Australia, and won the Donald Brittain Award for Best Social/Political Documentary at the 2013 Canadian Screen Awards. The film can be screened as a short or in its full 60 minute version. Themes in the film will be explored in more detail afterward through a panel discussion or Q&A. Attendees will leave with a new understanding of the unique challenges faced by young women with breast cancer around the issues of isolation, sexuality, fertility, parenting, and careers. http:// rethinkbreastcancer.com/our-work/about-her/