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Patients, advocates, doctors and nurses must work together to meet the underserved needs of metastatic breast cancer patients

21 Nov 2017
Patients, advocates, doctors and nurses must work together to meet the underserved needs of metastatic breast cancer patients

Metastatic breast cancer (mBC) remains one of the leading causes of female cancer deaths, but many women fighting this disease are left feeling isolated, as existing support services focus primarily on early-stage breast cancer.Patient Association Groups (PAGs) offer an important service to patients, but the greatest opportunity lies in multi-disciplinary care.By working together across a range of skill sets, multi-disciplinary teams can meet mBC patients’ varied physical and emotional needs.1

The number of breast cancer (BC) diagnoses in Europe is still increasing, representing 28.8% of all new cancer cases for women and 16.8% of female cancer deaths.Among women initially diagnosed and treated for earlier stages of BC, approximately one third will eventually develop mBC.Despite these significant numbers, mBC patients find it harder to access reliable information and support services than BC patients and mBC is perceived as receiving less public attention than BC, according to the international mBC General Population Survey of about 15,000 adults across 14 countries as part of the Global Status of Advanced / Metastatic Breast Cancer 2005 – 2015 Decade Report (GDR).As a result, patients with the most advanced form of BC often feel isolated and neglected.1

Patient Association Groups (PAGs) can be a key source of support and acknowledge the greater needs of mBC patients in terms of psychological support, financial support and access to services.1 Peer support networks are particularly valued.The mBC Patient Support Organization Survey amongst 50 international PAG members from 28 countries worldwide, as part of the GDR, ranked peer support among the top three priorities across all breast cancer stages.1

Peer support is particularly important to mBC patients given the emotional challenges and social isolation they experience.1 However, peer support networks for mBC are often challenging to implement.1 While PAGs strive to meet the local needs they consider to be the highest priority to patients in their communities, they are forced to prioritise their resources towards BC’s bigger patient population.1 In addition to funding, mBC patients’ own reluctance to participate in PAG programmes can create another barrier.1 Some patients do not wish to build their identity primarily on mBC, or find it traumatising to see their mBC peers progress or pass away.1

To overcome these challenges and meet mBC patients’ varied needs, multi-disciplinary involvement is beneficial.1 The Advanced Breast Cancer Guidelines, developed at the 2nd ESO-ESMO International Consensus Conference for Advanced Breast Cancer (ABC2), encourage a multi-disciplinary approach to support mBC patients’ physical, functional, social, psychological and spiritual needs.4 PAGs and multi-disciplinary teams, including healthcare professionals and in some countries, oncology nurses and other specialists, play a vital role in supporting mBC patients and their families.4 Collaborations among different PAGs and multi-disciplinary teams have helped to drive mBC-focused agendas and initiatives to support the mBC community and to address the special needs of women with mBC.1 The integrative and holistic approach allows for bundling of services and ensuring individualised care.1

Multi-disciplinary collaboration can not only enhance individual care, but also accelerate change in how the disease is perceived and handled. With this in mind, Pfizer Oncology hosted an “MBC Summit” with 50 patients, advocates, doctors and nurses from around the world. With the goal of improving lives for women with mBC, the group discussed key priorities to advance better conditions for women living with mBC in the areas of doctor-patient communication, public awareness and perception, and health policy. Their joint recommendations have been summarised in the “MBC Summit Position Paper”.

This multi-disciplinary collaboration aimed to raise awareness of the challenges patients with mBC are still facing. One fundamental challenge being that the general public’s understanding of breast cancer usually relates to early breast cancer, leading to significant misconceptions around mBC and eventually provoking isolation of women in later stages of the disease.5 The “MBC Summit Position Paper” seeks to include mBC in the larger breast cancer agenda and advocates for a better environment for all women facing mBC in the future. Amongst others, the multi-disciplinary group espouses an improved public understanding and increasing visibility of mBC in the media to counter a social exclusion of mBC within the public discourse. PAGs act as a first interface for the mBC patients.1 However, multi-disciplinary involvement offers a more holistic approach to mBC patient care. Additionally, patients receive more efficient and effective support services, for instance, psychological support due to social isolation and aids to decision making.1 These services do not only help patients but also doctors to choose the right treatment helping the patients to be guided through a long patient journey.

The integrated work of PAGs, multi-disciplinary teams and other specialists can not only help to meet the evolving needs of mBC patients around the world, but, by working together, this united mBC community can also drive change and create better conditions for mBC patients of the future.


MBC Summit and MBC Summit Position Paper

The 1st MBC Summit brought together over 50 patients, patient advocates, nurses and oncologists from 22 countries. Working side by side, these multi-disciplinary experts defined new ways to improve conditions for women living with mBC in Europe and beyond and created the MBC Summit Position Paper which highlights the most important issues to address in the mBC landscape.

1 Global Status of Advanced / Metastatic Breast Cancer: 2005 - 2015 Decade Report Summary. Spon-sored by Pfizer Oncology. March 2016. Available at: www.breastcancervision.com. Accessed November, 2017.

2 Stewart B, Wild, C. International Agency for Research on Cancer, World Health Organization. World Cancer Report, 2014.

3 O’Shaughnessy J. Extending Survival with Chemotherapy in Metastatic Breast Cancer. The Oncologist 2005;10:20-29.

4 Cardoso F, et al. ESO-ESMO 2nd international consensus guidelines for advanced breast cancer (ABC2). The Breast 2014;23:489-502.

5 Cardoso F, et al. Metastatic breast cancer patients: the forgotten heroes! The Breast 2009;18:271-272.

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