- Email: [email protected]
PALLIATIVE SPECIALIZED CARE
Abstracts / The Breast 22 S3 (2013) S19–S63
[1] NCCN Guidelines for Supportive Care, National Comprehensive Cancer Network, http://www.nccn.org/professionals/physician_ gls/f_guidelines.asp#supportive [2] Management of Cancer Symptoms: Pain, Depression, and Fatigue: Summary. D Carr, et. al., AHRQ Evidence Report Summaries, U.S. Department of Health and Human Services, Rockville, Md, 2002. http://www.ncbi.nlm.nih.gov/books/NBK11961/ [3] 1st International consensus guidelines for advanced breast cancer (ABC 1) F. Cardoso, et al. The Breast 21 (2012), 242-252. http://www. abc-lisbon.org/images/Allegati/abc1guidelines.pdf
IN25 DISPARITIES IN ACCESS TO SUPPORTIVE/PALLIATIVE SPECIALIZED CARE Nagi S. El Saghir Breast Center of Excellence, American University of Beirut Medical Center, Beirut, Lebanon In addition to disparities in prevention, early detection, diagnosis and treatment of patients with cancer, disadvantages are also present when it comes to availability and access to supportive and palliative care for various low socioeconomic, ethnic and underserved groups, as well as patients in Low- and Middle- Income Countries (LMCs). This presentation will focus on disparities in access to supportive and palliative care. Supportive and palliative care is closely related to quality of life of patients and their families. Supportive care includes prevention, evaluation and management of treatment-related complications. Supportive care should extend beyond treatment and cure, and involve survivorship support. Palliative care is meant for management of symptoms, signs and complications of advanced disease as well as end-of-life care. We will discuss access to support of patients during diagnosis, biopsy and surgery. Prevention and proper treatment of complications of surgery are important to avoid adverse effects of breast and axillary surgery. Poor cosmetic outcome and lymphedema are major disparity issues to be addressed in various parts of the world. Optimal prevention and control of nausea and vomiting are often overlooked and seen as inevitable in many parts of the world. We will discuss awareness, education (patients, families, communities, health care providers), and training of health professionals to ensure proper supportive care during different phases of patient management. International programs, local workshops, specialized centers, and roles of health authorities will be discussed. Palliative care of patients with end stage disease remains a major issue of disparities across various regions of the world. Awareness, education, training, and role special programs will be reviewed. Access to proper management of pain and opiod therapy will be presented. International Initiatives for building bridges to conquer cancer and to ensure quality care will be outlined.
Nursing and Advocacy OR26 THE CHALLENGES IN OPTIMISING CARE IN PATIENTS WITH ADVANCED BREAST CANCER: RESULTS OF AN INTERNATIONAL SURVEY Susan McCutcheon1, Fatima Cardoso2 1 Eisai Value Maximization Systems, Hatfield, UK, 2Champalimaud Cancer Center, Lisbon, Portugal The recognition that the lack applicable clinical guidelines in Advanced Breast Cancer (ABC) was hampering the delivery of optimal patient care and adversely affecting patient outcomes culminated in the 1st Consensus Meeting for ABC in late 2011. However, little is documented on the other issues specific to ABC that are preventing some of the improvements that have been seen in earlier stage disease.
S27
Registered attendees to the ABC1 meeting, members of EONS and advocacy groups were asked to complete an online questionnaire that surveyed their involvement in breast cancer treatment, their thoughts on the profile of ABC compared to early stage breast cancer (EBC), the barriers and solutions towards optimising patient care and the resources available for the specific treatment of ABC. 609 responses were received, of which 65% were from Europe, 65% were from developed nations and 50% were medical or clinical oncologists. Almost 80% of respondents agreed that ABC was not as high profile as EBC, with both lack of clear and applicable treatment guidelines and lack of evidence for treatment options being seen as both critical issues why this disparity exists and critical barriers to optimising patient care. Lack of, research targeted specifically at the advanced stage of disease, predictive markers to facilitate treatment decisions, multidisciplinary working and patient support services were also seen as key barriers. Dedicated and better training for clinical staff, research and clinical trials, education, adoption of clinical guidelines, advocacy, access to treatment and government engagement and funding were the main themes cited to overcome these barriers. In terms current practice, the MDT is adopted widely, but only 38% have an ABC dedicated MDT. The breast cancer specialist nurse is still not available according to 35% and 64% of respondents in developed and developing countries respectively. The NCCN and the ESMO guidelines were each referenced by approximately 50% of respondents The agreement on and implementation of clinical guidelines is only one of the critical issues hampering optimisation of patient care in ABC. While recognition of the problems is an important first step, much more needs to be done to overcome them.
BP27 COUNT US, KNOW US, JOIN US GLOBAL SURVEY: LOOKING AT QUALITY OF LIFE ISSUES AFFECTING ADVANCED BREAST CANCER PATIENTS WORLDWIDE AND THE ROLE OF THEIR CAREGIVERS Shirley Mertz1, Deana Percassi2 Metastatic Breast Cancer Network, New York, NY, USA; 2Harris Interactive, Rochester, NY, USA 1
Background: Advanced breast cancer (ABC) is the most serious form of breast cancer, affecting nearly 250,000 people worldwide. Advanced breast cancer includes stage III, in which cancer spreads to lymph nodes, skin, or chest wall, and stage IV, metastatic breast cancer, in which cancer spreads to the lungs, liver, bones, or brain. Advanced breast cancer has important health implications, requires life-long treatment, and is usually fatal. Support needs for this patient group are unique yet rarely met. Hoping to identify new approaches to meet the needs of this community, a global survey was commissioned by Novartis Oncology in partnership with the global advocacy community. Methods: Harris Interactive conducted an online survey between October 2012 and March 2013. It was completed by 1,273 female MBC patients ages 21+ from 12 countries (United States, Canada, Mexico, Brazil, Argentina, United Kingdom, Germany, Russia, India, Lebanon, Taiwan, and Hong Kong). Total sample data are not weighted and are representative only of the individuals surveyed. A global post-weight was applied to ensure all countries received an equal weight in the global and regional data. Results: Of the 1,273 women completing the survey, 68% responded that ABC had a lot or a moderate amount of negative impact on their overall quality of life (QOL). Emotional health had been significantly negatively affected by ABC in 64% of respondents; however, only 51% had discussed QOL issues with their healthcare provider. Additionally, many women had experienced a negative impact on other aspects of their own or loved ones’ mental health, including their attitude (56%), desire to participate in certain activities (57%), and the emotional health of people with whom they have close relationships (57%). Fewer than 2 in 5 women had spoken with their healthcare provider about their emotional well-being (39%), and only 30% had addressed the impact ABC has had on their family. More than 3 in 4 (77%) women had a caregiver. Women with caregivers were more likely to feel they received enough
[1] NCCN Guidelines for Supportive Care, National Comprehensive Cancer Network, http://www.nccn.org/professionals/physician_ gls/f_guidelines.asp#supportive [2] Management of Cancer Symptoms: Pain, Depression, and Fatigue: Summary. D Carr, et. al., AHRQ Evidence Report Summaries, U.S. Department of Health and Human Services, Rockville, Md, 2002. http://www.ncbi.nlm.nih.gov/books/NBK11961/ [3] 1st International consensus guidelines for advanced breast cancer (ABC 1) F. Cardoso, et al. The Breast 21 (2012), 242-252. http://www. abc-lisbon.org/images/Allegati/abc1guidelines.pdf
IN25 DISPARITIES IN ACCESS TO SUPPORTIVE/PALLIATIVE SPECIALIZED CARE Nagi S. El Saghir Breast Center of Excellence, American University of Beirut Medical Center, Beirut, Lebanon In addition to disparities in prevention, early detection, diagnosis and treatment of patients with cancer, disadvantages are also present when it comes to availability and access to supportive and palliative care for various low socioeconomic, ethnic and underserved groups, as well as patients in Low- and Middle- Income Countries (LMCs). This presentation will focus on disparities in access to supportive and palliative care. Supportive and palliative care is closely related to quality of life of patients and their families. Supportive care includes prevention, evaluation and management of treatment-related complications. Supportive care should extend beyond treatment and cure, and involve survivorship support. Palliative care is meant for management of symptoms, signs and complications of advanced disease as well as end-of-life care. We will discuss access to support of patients during diagnosis, biopsy and surgery. Prevention and proper treatment of complications of surgery are important to avoid adverse effects of breast and axillary surgery. Poor cosmetic outcome and lymphedema are major disparity issues to be addressed in various parts of the world. Optimal prevention and control of nausea and vomiting are often overlooked and seen as inevitable in many parts of the world. We will discuss awareness, education (patients, families, communities, health care providers), and training of health professionals to ensure proper supportive care during different phases of patient management. International programs, local workshops, specialized centers, and roles of health authorities will be discussed. Palliative care of patients with end stage disease remains a major issue of disparities across various regions of the world. Awareness, education, training, and role special programs will be reviewed. Access to proper management of pain and opiod therapy will be presented. International Initiatives for building bridges to conquer cancer and to ensure quality care will be outlined.
Nursing and Advocacy OR26 THE CHALLENGES IN OPTIMISING CARE IN PATIENTS WITH ADVANCED BREAST CANCER: RESULTS OF AN INTERNATIONAL SURVEY Susan McCutcheon1, Fatima Cardoso2 1 Eisai Value Maximization Systems, Hatfield, UK, 2Champalimaud Cancer Center, Lisbon, Portugal The recognition that the lack applicable clinical guidelines in Advanced Breast Cancer (ABC) was hampering the delivery of optimal patient care and adversely affecting patient outcomes culminated in the 1st Consensus Meeting for ABC in late 2011. However, little is documented on the other issues specific to ABC that are preventing some of the improvements that have been seen in earlier stage disease.
S27
Registered attendees to the ABC1 meeting, members of EONS and advocacy groups were asked to complete an online questionnaire that surveyed their involvement in breast cancer treatment, their thoughts on the profile of ABC compared to early stage breast cancer (EBC), the barriers and solutions towards optimising patient care and the resources available for the specific treatment of ABC. 609 responses were received, of which 65% were from Europe, 65% were from developed nations and 50% were medical or clinical oncologists. Almost 80% of respondents agreed that ABC was not as high profile as EBC, with both lack of clear and applicable treatment guidelines and lack of evidence for treatment options being seen as both critical issues why this disparity exists and critical barriers to optimising patient care. Lack of, research targeted specifically at the advanced stage of disease, predictive markers to facilitate treatment decisions, multidisciplinary working and patient support services were also seen as key barriers. Dedicated and better training for clinical staff, research and clinical trials, education, adoption of clinical guidelines, advocacy, access to treatment and government engagement and funding were the main themes cited to overcome these barriers. In terms current practice, the MDT is adopted widely, but only 38% have an ABC dedicated MDT. The breast cancer specialist nurse is still not available according to 35% and 64% of respondents in developed and developing countries respectively. The NCCN and the ESMO guidelines were each referenced by approximately 50% of respondents The agreement on and implementation of clinical guidelines is only one of the critical issues hampering optimisation of patient care in ABC. While recognition of the problems is an important first step, much more needs to be done to overcome them.
BP27 COUNT US, KNOW US, JOIN US GLOBAL SURVEY: LOOKING AT QUALITY OF LIFE ISSUES AFFECTING ADVANCED BREAST CANCER PATIENTS WORLDWIDE AND THE ROLE OF THEIR CAREGIVERS Shirley Mertz1, Deana Percassi2 Metastatic Breast Cancer Network, New York, NY, USA; 2Harris Interactive, Rochester, NY, USA 1
Background: Advanced breast cancer (ABC) is the most serious form of breast cancer, affecting nearly 250,000 people worldwide. Advanced breast cancer includes stage III, in which cancer spreads to lymph nodes, skin, or chest wall, and stage IV, metastatic breast cancer, in which cancer spreads to the lungs, liver, bones, or brain. Advanced breast cancer has important health implications, requires life-long treatment, and is usually fatal. Support needs for this patient group are unique yet rarely met. Hoping to identify new approaches to meet the needs of this community, a global survey was commissioned by Novartis Oncology in partnership with the global advocacy community. Methods: Harris Interactive conducted an online survey between October 2012 and March 2013. It was completed by 1,273 female MBC patients ages 21+ from 12 countries (United States, Canada, Mexico, Brazil, Argentina, United Kingdom, Germany, Russia, India, Lebanon, Taiwan, and Hong Kong). Total sample data are not weighted and are representative only of the individuals surveyed. A global post-weight was applied to ensure all countries received an equal weight in the global and regional data. Results: Of the 1,273 women completing the survey, 68% responded that ABC had a lot or a moderate amount of negative impact on their overall quality of life (QOL). Emotional health had been significantly negatively affected by ABC in 64% of respondents; however, only 51% had discussed QOL issues with their healthcare provider. Additionally, many women had experienced a negative impact on other aspects of their own or loved ones’ mental health, including their attitude (56%), desire to participate in certain activities (57%), and the emotional health of people with whom they have close relationships (57%). Fewer than 2 in 5 women had spoken with their healthcare provider about their emotional well-being (39%), and only 30% had addressed the impact ABC has had on their family. More than 3 in 4 (77%) women had a caregiver. Women with caregivers were more likely to feel they received enough