Living with metastatic breast cancer: patient needs in Spain

Living with metastatic breast cancer: patient needs in Spain

Themes: 
Information and support gap
Raising patient voices and awareness

Context

According to the Federación Española de Cancer de Mama (FECMA), patients in Spain are living longer as a result of innovations in the treatment of advanced breast cancer. FECMA set out to identify how metastatic breast cancer (MBC) patients are coping with the challenge presented by the disease as well as to understand which factors of oncological care best meet their needs. To raise national awareness about MBC patients’ needs, FECMA organised a campaign which they successfully launched across Spain.

FECMA represents 43 local breast cancer associations and the voice of the 45.300 women and men in Spain that have suffered or are suffering from breast cancer. The goal of FECMA is to raise awareness about breast cancer patient’s needs, and advocate for them. FECMA was awarded a SPARC MBC Challenge grant in 2015 and utilised its extensive breast cancer network to carry out their project which consisted of two components: a research study and an awareness campaign. The main goal of FECMA’s project is to normalise the challenging lives of women with metastatic breast cancer and help them to feel supported by professionals and society.

Toñy Gimón, Vice President of FECMA - Photo source: https://www.elmundo.es/elmundosalud/2010/02/03/oncologia/1265200297.html

“[SPARC has helped us] make possible what seemed impossible and to attract the attention on women with metastatic breast cancer in Spain.”

Toñy Gimón

Project description

FECMA_Campaign_Image_3.jpg

FECMA Campaign

The study was conducted in order to identify MBC patients’ specific needs and preferences with regards to the support they receive. Study participants were both patients and professionals from the majority of Spanish regions. The study design was descriptive and explanatory, based on a qualitative methodology aimed at understanding health professionals’ working in the field of breast cancer and patients’ perspectives regarding MBC care. Focus groups and interviews were conducted in order to explore participants’ views with varying levels of complexity. The study was conducted in all 17 autonomous communities[1] of Spain.

FECMA published the study, its findings and recommendations on addressing MBC in Spain in the booklet “Cáncer en presente continuo” [cancer in a continuous state]. It has also produced a video which shows a brief analysis of MBC in Spain including impactful MBC patients’ testimonies. These were the core communication materials used in the national awareness campaign, which aimed to raise awareness about MBC patients’ needs among stakeholders such as health authorities, patient associations and the scientific community.

Impact

The study and campaign successfully sparked and informed a continuing discussion amongst stakeholders in Spain about MBC and the need for more comprehensive care for MBC patients. 2500 copies of the booklet were printed and distributed to both national and local health administration, the medical and scientific communities, patients’ associations and society more widely.

FECMA Press Conference

In addition, FECMA held a meeting and a press conference in Madrid in June 2017 at the Institute of Health Carlos III, the leading, governmental institution in Spain in the field of public health on the topic of "Challenges of the Public Health system facing the ABC reality".

Since 2008, FECMA organises a yearly conference on breast cancer at the International University Menéndez Pelayo with between 100 and 120 attendees each year, uniting health professionals, politicians, press, and patients. Going forward, FECMA will continue to advocate for better MBC care to be included in the strategic plan of the Spanish National Health System, and continues to promote its manifesto for breast cancer at a national level.

More

Organisation's website: FECMA

Booklet:“Cáncer en presente continuo:  perspectivas, necesidades y retos en la atención al cáncer de mama metastásico”. [cancer in a continuous state: perspectives, needs and challenges regarding metastatic breast cancer care]

Video interview: "FECMA - SPARC MBC Challenge Grant Awardee" with Joan Prades, programme collaborator

UICC article: "SPARC grant awardees - Meet Joan from Spain" 

References

[1] An autonomous community (Spanish: comunidad autónoma) is a first-level political and administrative division, created in accordance with the Spanish constitution of 1978.

(Information from the project description and context is compiled from the SPARC reports) 

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Last update: 
Monday 16 March 2020
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