- Email: [email protected]
Tanto POR Hacer
Abstracts / The Breast 36 S1 (2017) S19–S76
Aim: To synthesise results of two BCNA research projects and determine the unique information, support and financial needs of people with MBC compared to those with early breast cancer (EBC). Methods: Survey data was extracted from two BCNA online surveys: (1) the BCNA Member Survey 2017 and (2) the Financial Impact of Breast Cancer Project (2016). The member survey invited 35,852 BCNA members to participate in an online survey via email and SMS invitations. A survey link was also made available on the BCNA website to anyone with a diagnosis of breast cancer. The financial project examined out-of-pocket costs of breast cancer for a wide variety of treatments and supportive care services. A mixed-methods approach was used including an online survey conducted and analysed by Deloitte Access Economics and a set of 16 telephone interviews conducted by BCNA written into case studies. Results: People with MBC represented 5% of the 8,226 member surveys completed. About 1 in 4 people with MBC had unmet information and support needs in the last 12 months, compared to 1 in 10 people with EBC. Managing fatigue was the top unmet information need for both MBC (28%) and EBC (16%) participants. Unique unmet needs of those with MBC included information on clinical trials (34%) and advice that palliative care services can help from diagnosis (28%). About double the proportion of those with MBC (23%) reported having less contact with a Breast Care Nurse than preferred. Managing the financial costs of breast cancer was the second top information need for those with MBC (24%) compared to sixth top for those with EBC (11%). People with MBC represented 14% of the 1,919 financial surveys completed. Their median out-of-pocket cost was $12,465 within five years of diagnosis. The reported costs of breast cancer were quite variable, depending on diagnosis type and complexity of treatment and supportive care required. The 25th to 75th interquartile range of the median cost of MBC was $8,121 to $25,210 within five years of diagnosis. Conclusion: BCNA’s research shows that Australians with MBC have a higher proportion of unmet information and support needs compared to those with EBC. Their financial costs are substantial and continue for the rest of their lives. Efforts to address issues identified in our research will help to reduce inequities in care.
PO43 TANTO POR HACER Eliza Puente Asociacion Mexicana contra el cancer de mama AC, Management Dept., Mexico City, Mexico For the last three years, worked on creating spaces for women with MBC and their families. Through our MBC support group, we have learned of the great need for more spaces where their voices can be heard in order for their needs to be met. This experience, added to our 15 year history working with and for BC patients in Mexico, leads us to this grant application. Thanks to the UICC-SPARC MBC grant, last year Fundacion Cimab was able to create and launch www.tantoporhacer.org in which Spanish and Portuguese speaking MBC patients and their families, can find relevant information such as scientific information, nutrition, sexuality, patient testimonies, palliative care, and patients rights, that help them achieve a better quality of life. We also have the support of a Mexican and a Brasilian psycho-oncologist who provide emotional support through the chat room to all the patients, as well as in private one on one virtual sessions. Derived from the needs expressed by the patients, we conducted two webinars. We have a bimonthly newsletter and invited our patients and families to our chats, and interactive sessions. The topics of the 4 newsletters were: ‘Metastatic Breast Cancer and
S35
Emotional Reactions’, ‘Palliative Care’, ‘Motivation and Positive Attitude’ and finally, ‘Family Relations’. Social networks, Facebook and Twitter to publicize this platform and invite patients and families to join it. We have had almost 12,000 visit to our web page, 539 persons receive our newsletter, and 3648 follow us in FB. We made a video testimony of patients and families with metastatic cancer. Its purpose was to raise awareness and generate empathy among the general public of the challenges that patients, families and close friends face every day. The central theme of the video is: ‘Tanto por hacer, Tanto por decir’ (So much to do, So much to say) in an effort to empower patients so that they ask their governments for access to innovative treatment and join in a call to action to improve their quality of life. The other 2 videos were on end of life will, skin care and make up for the MBC patient. This video reached more than 54,000 persons. Cimab Foundation as a founding member of ULACCAM (Latin American regional women’s cancers coalition) and as a founder member of COMESAMA (Coalición Mexicana por la Salud Mamaria), is aware of the enormous need for information and networking opportunities not only in Mexico, but in the region. We hope to continue to offer the MBC patient a space where her voice can be heard, that has already. We are proud of the power that the patient has gained through this page, and we believe the MBC community will be empowered to seek better and more targeted services, both medical and non-medical, that lead to a better quality of life.
PO44 SOCIAL MEDIA STORYTELLING AS AN ADVOCACY AND SUPPORT TOOL FOR PEOPLE LIVING WITH METASTATIC BREAST CANCER Janine Guglielmino, Catherine Ormerod, Arin Ahlum Hanson, MPH, CHES, Ingrid Mapanao Living Beyond Breast Cancer, Programs and Partnerships, Bala Cynwyd, USA Introduction: People living with metastatic breast cancer (MBC) often experience feelings of isolation, shame and stigma associated with living with a terminal diagnosis. In the United States more than 60% of Americans report knowing little to nothing about MBC. Living beyond Breast Cancer (LBBC), an information and support nonprofit organization in the U.S., has trained 83 volunteers in its Hear My Voice Metastatic Breast Cancer Outreach Volunteer Program. This program provides tools and training to identify and implement advocacy and outreach projects that lessen isolation for volunteers and others living with this terminal disease while also educating the public about the disease. Two main training elements are: (1) an overview of the current landscape of MBC epidemiology, research, treatments and resources; and (2) an introduction to using personal storytelling to impact advocacy efforts through social media, a medium well suited for personal stories, education and advocacy. Methods: During the program, volunteers create activities in their communities aimed at reaching others similarly diagnosed and connecting them to resources and support. With guidance from LBBC staff, volunteers also develop and drive a one-day social media campaign to educate the public about MBC by telling their stories through words and pictures. The 2015 campaign, #BeyondtheBreast, delivered the message that breast cancer becomes deadly when it leaves the breast and travels to other organs. In 2016, the #Stage4Lifer campaign was developed, and volunteers told their personal stories about how cancer impacted their lives through words, photos and/or videos. The 2017 class will launch its campaign in September 2017. All campaigns include action steps to drive people to information or resources for those with metastatic breast cancer.
Aim: To synthesise results of two BCNA research projects and determine the unique information, support and financial needs of people with MBC compared to those with early breast cancer (EBC). Methods: Survey data was extracted from two BCNA online surveys: (1) the BCNA Member Survey 2017 and (2) the Financial Impact of Breast Cancer Project (2016). The member survey invited 35,852 BCNA members to participate in an online survey via email and SMS invitations. A survey link was also made available on the BCNA website to anyone with a diagnosis of breast cancer. The financial project examined out-of-pocket costs of breast cancer for a wide variety of treatments and supportive care services. A mixed-methods approach was used including an online survey conducted and analysed by Deloitte Access Economics and a set of 16 telephone interviews conducted by BCNA written into case studies. Results: People with MBC represented 5% of the 8,226 member surveys completed. About 1 in 4 people with MBC had unmet information and support needs in the last 12 months, compared to 1 in 10 people with EBC. Managing fatigue was the top unmet information need for both MBC (28%) and EBC (16%) participants. Unique unmet needs of those with MBC included information on clinical trials (34%) and advice that palliative care services can help from diagnosis (28%). About double the proportion of those with MBC (23%) reported having less contact with a Breast Care Nurse than preferred. Managing the financial costs of breast cancer was the second top information need for those with MBC (24%) compared to sixth top for those with EBC (11%). People with MBC represented 14% of the 1,919 financial surveys completed. Their median out-of-pocket cost was $12,465 within five years of diagnosis. The reported costs of breast cancer were quite variable, depending on diagnosis type and complexity of treatment and supportive care required. The 25th to 75th interquartile range of the median cost of MBC was $8,121 to $25,210 within five years of diagnosis. Conclusion: BCNA’s research shows that Australians with MBC have a higher proportion of unmet information and support needs compared to those with EBC. Their financial costs are substantial and continue for the rest of their lives. Efforts to address issues identified in our research will help to reduce inequities in care.
PO43 TANTO POR HACER Eliza Puente Asociacion Mexicana contra el cancer de mama AC, Management Dept., Mexico City, Mexico For the last three years, worked on creating spaces for women with MBC and their families. Through our MBC support group, we have learned of the great need for more spaces where their voices can be heard in order for their needs to be met. This experience, added to our 15 year history working with and for BC patients in Mexico, leads us to this grant application. Thanks to the UICC-SPARC MBC grant, last year Fundacion Cimab was able to create and launch www.tantoporhacer.org in which Spanish and Portuguese speaking MBC patients and their families, can find relevant information such as scientific information, nutrition, sexuality, patient testimonies, palliative care, and patients rights, that help them achieve a better quality of life. We also have the support of a Mexican and a Brasilian psycho-oncologist who provide emotional support through the chat room to all the patients, as well as in private one on one virtual sessions. Derived from the needs expressed by the patients, we conducted two webinars. We have a bimonthly newsletter and invited our patients and families to our chats, and interactive sessions. The topics of the 4 newsletters were: ‘Metastatic Breast Cancer and
S35
Emotional Reactions’, ‘Palliative Care’, ‘Motivation and Positive Attitude’ and finally, ‘Family Relations’. Social networks, Facebook and Twitter to publicize this platform and invite patients and families to join it. We have had almost 12,000 visit to our web page, 539 persons receive our newsletter, and 3648 follow us in FB. We made a video testimony of patients and families with metastatic cancer. Its purpose was to raise awareness and generate empathy among the general public of the challenges that patients, families and close friends face every day. The central theme of the video is: ‘Tanto por hacer, Tanto por decir’ (So much to do, So much to say) in an effort to empower patients so that they ask their governments for access to innovative treatment and join in a call to action to improve their quality of life. The other 2 videos were on end of life will, skin care and make up for the MBC patient. This video reached more than 54,000 persons. Cimab Foundation as a founding member of ULACCAM (Latin American regional women’s cancers coalition) and as a founder member of COMESAMA (Coalición Mexicana por la Salud Mamaria), is aware of the enormous need for information and networking opportunities not only in Mexico, but in the region. We hope to continue to offer the MBC patient a space where her voice can be heard, that has already. We are proud of the power that the patient has gained through this page, and we believe the MBC community will be empowered to seek better and more targeted services, both medical and non-medical, that lead to a better quality of life.
PO44 SOCIAL MEDIA STORYTELLING AS AN ADVOCACY AND SUPPORT TOOL FOR PEOPLE LIVING WITH METASTATIC BREAST CANCER Janine Guglielmino, Catherine Ormerod, Arin Ahlum Hanson, MPH, CHES, Ingrid Mapanao Living Beyond Breast Cancer, Programs and Partnerships, Bala Cynwyd, USA Introduction: People living with metastatic breast cancer (MBC) often experience feelings of isolation, shame and stigma associated with living with a terminal diagnosis. In the United States more than 60% of Americans report knowing little to nothing about MBC. Living beyond Breast Cancer (LBBC), an information and support nonprofit organization in the U.S., has trained 83 volunteers in its Hear My Voice Metastatic Breast Cancer Outreach Volunteer Program. This program provides tools and training to identify and implement advocacy and outreach projects that lessen isolation for volunteers and others living with this terminal disease while also educating the public about the disease. Two main training elements are: (1) an overview of the current landscape of MBC epidemiology, research, treatments and resources; and (2) an introduction to using personal storytelling to impact advocacy efforts through social media, a medium well suited for personal stories, education and advocacy. Methods: During the program, volunteers create activities in their communities aimed at reaching others similarly diagnosed and connecting them to resources and support. With guidance from LBBC staff, volunteers also develop and drive a one-day social media campaign to educate the public about MBC by telling their stories through words and pictures. The 2015 campaign, #BeyondtheBreast, delivered the message that breast cancer becomes deadly when it leaves the breast and travels to other organs. In 2016, the #Stage4Lifer campaign was developed, and volunteers told their personal stories about how cancer impacted their lives through words, photos and/or videos. The 2017 class will launch its campaign in September 2017. All campaigns include action steps to drive people to information or resources for those with metastatic breast cancer.