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Information and support for metastatic breast cancer patients in Malaysia
Themes:
Information and support gap
Context
According to the Malaysian National Cancer Registry Report 2012-2016, 47.9% of breast cancer cases in Malaysia were detected at stages III and IV.[1] In Malaysia, there are few programmes tailored to the needs of metastatic breast cancer (MBC) patients and according to the National Cancer Society Malaysia (NCSM) there is a general lack of knowledge about MBC in the local community. In order to raise awareness about the disease and to develop resources that are specific for these patients, NCSM has created a webpage specifically dedicated to MBC patients on their website.
NCSM provides clinical services, as well as education and support to people affected by cancer in Malaysia. It supports patients and caregivers throughout their cancer journey in order that cancer patients can attain the highest possible quality of life.
“For us at NCSM, the SPARC grant proved to be the catalyst to drive us to build more resources and projects aimed specifically at advanced breast cancer patients. Today, it is integral to the organisation in terms of planning and provision to have specific targeted programmes for advanced breast cancer and to work towards meeting their needs.”
Project description
NCSM received a SPARC MBC Challenge grant in 2015 for their project “Information and support for metastatic breast cancer patients in Malaysia”. The goal of this project was to create a webpage hosted within the NCSM website specifically dedicated for MBC patients and that acted as a “hub” to pool information and resources.
The webpage created contains information on MBC as well as a live chat function for patients, and news on the latest updates on treatment. Through this webpage, MBC patients are oriented towards the relevant support needed. The live chat allows MBC patients the possibility to chat with each other and access peer support in their journey.
Impact
The webpage was published in 2017 and has raised awareness. The webpage also elicited participation from the MBC community in Malaysia, who have also been subsequently encouraged to join NCSM’s support groups. Additionally, a Breast Cancer Forum was organised in October 2017, which was attended by about 60 breast cancer survivors, healthcare providers and in which the webpage and online facilities were promoted.
More
Organisation’s website: NCSM official website
References
[1] Ministry of Health Malaysia. Malaysian National Cancer Registry Report 2012-2016. June 2019. Accessed [11 March 2020]. https://drive.google.com/file/d/1BuPWrb05N2Jez6sEP8VM5r6JtJtlPN5W/view
(Information from the project description and context is compiled from the SPARC reports)
Last update:
Tuesday 17 March 2020
Cancer type:
stream