Information materials for advanced breast cancer patients in Portugal

Information materials for advanced breast cancer patients in Portugal

Themes: 
Information and support gap

Context

Like other European countries, breast cancer is the most common cancer among women in Portugal.[1] Overall, patient survival and awareness of diagnosis and treatment of early breast cancer have increased over the past decade. However, according to Associação Mama Help (referred to as Mama Help), in 2015, patients only had access to information in Portuguese relating to early breast cancer. To help Portuguese-speaking women with late-stage disease to access information and support tailored to their needs, Mama Help created a dedicated MBC website for them.

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Mama Help is a non-profit organisation, open to the public, whose goal is to provide information and support on breast cancer in Portuguese, throughout the patient journey. Mama Help considers itself as an information centre to help all breast cancer patients and caregivers better live with the disease.

Project description

In 2015, Mama Help was awarded a SPARC MBC Challenge grant to strengthen the Mama Help website adding tailored content for MBC patients and their relatives. Prior to embarking on this project, Mama Help already held a prominent position in the Portuguese breast cancer community through their organisation’s website and Facebook page, and this supported successful implementation of the SPARC project.

They collaborated with Champalimaud Cancer Center Breast Unit, which provided Mama Help with high-quality and updated scientific information for all the content they produced, such as their MBC webpage and MBC-related information guides on topics such as MBC medication, radiotherapy for MBC or general information on MBC. Mama Help also created a national map on the website with the locations of clinical trials to help MBC patients access open trials for advanced disease.

Information sessions, specifically dedicated to advanced breast cancer, were open to the public and held at Mama Help offices in Porto and in Lisbon. As part of promoting the new MBC materials and engaging with the press, talks titled “what the journalists should know to about advanced breast cancer” were given in information sessions.  

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Impact

Mama Help produced 31 information guides specifically dedicated to different aspects of advanced breast cancer. In the five years following the creation of the MBC webpage, 5,000 booklets have been printed and distributed.

Since 2015, 20 information sessions for patients have been held, and the dedicated MBC webpage is still in use. It serves to promote information on available clinical trials, information materials, and upcoming MBC events held in Porto and Lisbon. More than 140 events for breast cancer patients have been promoted on the website since its launch.

More

Organisation's website: Associação Mama Help (in Portuguese)

Project webpage: Advanced Cancer (in Portuguese) 

Video interview: "Associação Mama Help- SPARC MBC Challenge Grant Awardee", with Maria-Joao Cardoso, President of Associação Mama Help

References

[1] GLOBOCAN 2018

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

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Last update: 
Tuesday 17 March 2020
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