Patients face a lack of adequate metastatic breast cancer-focused information, according to the Global Decade Report, developed by Pfizer Oncology, working collaboratively with the European School of Oncology (ESO).

Since the early 1990s mortality rates from breast cancer (BC) have been decreasing steadily in most Western countries as a result of advances both in early detection and in adjuvant systemic therapy.¹ Still, with about 131,260 deaths per year in Europe, BC is the most common cancer among women.² In spite of these advances, the prognosis of metastatic breast cancer (mBC) patients in Europe has only improved modestly over the past three decades.³  Progress in mBC management and support has not kept pace with the evolution witnessed in managing early breast cancer (eBC).⁴

The difference in the experience of eBC and mBC patients is also apparent in the availability of information about their disease: In a report exploring the individual experiences of mBC patients, the information and support provided for mBC patients was found to be inadequate compared to the services available at the time of an initial diagnosis of eBC.⁵

The Global Status of Advanced/Metastatic Breast Cancer 2005 – 2015 Decade Report revealed the difficulties healthcare professionals (HCPs) experience in providing patients with appropriate mBC-focused information: A 2015 primary research survey published within this report found that among specialists who treat breast cancer (568 respondents from US, UK, Germany, Italy, Portugal, Brazil, Mexico, Australia), 62% considered seven different types of mBC-specific, patient-directed resources helpful.⁴ However, the same specialists frequently did not have these resources available to offer to their patients.⁴ 62% of the respondents believed, for example, that a mBC dictionary defined in patient-friendly language would be helpful, but only 19% could offer this to their patients.⁴ Where resources do exist, finding them can be a challenge. Over three quarters (78%) of the HCP respondents stated that mBC patients and their families would benefit from support in the identification of currently available resources for mBC patients and guidance on where to find these resources.⁴

Apart from getting information from their HCPs, patients also need mBC-focused information from other reliable sources.⁶ The results of an international survey among 1,342 mBC patients showed that the majority (63%) received their information from written materials such as brochures and books.⁶ Nevertheless, websites or other internet resources ranked as the most useful sources of information acknowledged by 23% of mBC patients.⁶ This suggests there is a gap between the print information that is currently provided, and the desire for more online tools. Despite seeking information on a variety of topics about treatment and care from multiple sources, patients have difficulties finding the information they need.⁷

To address this unmet need, a comprehensive online resource was recently developed by Pfizer Oncology in co-creation with patients to help answer questions about diagnosis, treatment and side effects mBC patients may face. The information is intended to guide patients’ questions and help them to get the most out of conversations with their HCPs, as they are always the best source of information about their care and condition. To enhance understanding, a glossary explaining the common terms is made available. The website is one step forward in providing patients the information they need in an easily accessible format to supplement the support and information they receive from their HCP.

Alongside factual information, many mBC patients also need greater emotional support. A global survey, with over 14,000 members of the general public from 14 countries, revealed that 18-49% (Argentina 18% - India 49%) believe women with mBC should not talk about their disease with anyone other than their physician.⁴ In Europe, 22–33% of respondents agree somewhat/strongly (UK 24%, France 22%, Germany 27%, Poland 33%). Isolation and bottling up emotions is a key issue for women with mBC, hence handling this emotional strain is important. To help women with mBC record their feelings and optionally let family and friends know when they need extra support, the EmotionSpace app was recently launched by Pfizer Oncology in collaboration with patients. To address the existing gap, the app is currently being piloted in Germany, allowing women with mBC to share emotions that are hard to talk about.

These resources are among a range of new digital tools aiming to support women with mBC. ecancerpatient provides information for patients to use while discussing treatment options with their doctor, and iManageCancer is a self-management tool allowing patients to track and share their health status with their HCPs.

While first steps have been taken addressing the unmet needs of mBC patients, there is still a long road to go until patients in the advanced setting receive the same attention and resources as patients in the early setting. A joint effort is invaluable to provide relevant resources and support for all patients, regardless of the stage of their disease.

The Me & MBC Website provides comprehensive information for mBC patients to help them live with their disease.

^{_{1 Cardoso F, et al. Locally recurrent or metastatic breast cancer: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up. Ann Oncol 2012;23(Suppl 7):vii11-vii19.
2 Stewart B, Wild C. International Agency for Research on Cancer, World Health Organization. World Cancer Report. 2014.
3 Di Leo A, et al. New approaches for improving outcomes in breast cancer in Europe. Breast 2015;24:321-30.
4 Global Status of Advanced/Metastatic Breast Cancer: 2005 - 2015 Decade Report. Sponsored by Pfizer Oncology. March 2016. Available at www.breastcancervision.com.
5 Johnston SRD. Living with secondary breast cancer: Coping with an uncertain future. Eur J Cancer Care 2010;19:561-563.
6 Mayer M. Living with metastatic breast cancer: a global patient survey. Community Oncology. 2010;7:406-412.
7 Harding V, et al. ‘Being there’ for women with metastatic breast cancer: a pan-European patient survey. Br J Cancer 2013;109:1543-1548.}}

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