Guiding metastatic breast cancer women after diagnosis: an avatar-based platform

Context

In Cyprus, breast cancer incidence is growing year by year with over 760 women diagnosed annually in 2020. There is a lack of appropriate information and support for metastatic breast cancer (MBC) patients, which negatively impacts the quality of life of women and their families. Making use of innovative approaches such as an avatar-based platform enables patients to better manage symptoms and access information in a tailored and effective way.

The University of Cyprus (UCY) is a rapidly expanding university with experience in developing an avatar-based platform for a smoking cessation campaign which has delivered strong results, UCY collaborated with a number of other organisations to implement this project including Europa Donna Cyprus, American Medical Centre, and Bank of Cyprus Oncology Centre, Breast Cancer Centre of Cyprus. Through this experience and collaboration, the University has been able to create an avatar-based platform to serve MBC patients across the country, with the potential for global application.  

Project description

UCY was awarded a SPARC award in October 2019 as part of the Round 3 cohort of 11 grantees. The project aimed to support women with MBC following diagnosis by the launch of an avatar-based web tool. Avatars are digital self-representations, which enable individuals to interact with each other in computer-based virtual environments. Avatars provide a personalised and private experience that can provide useful information on a wide range of topics within a short time frame. The project brought together academics, clinicians, policymakers and patients with an emphasis on influencing care provision.

The project set out to achieve four main objectives: 

• Understand which unmet needs present the greatest challenge for the women through surveying focus groups and to identify potential solutions for patients.
• Design and pilot an avatar-based web tool (MET-GUIDE) that provides women with information on the care pathway, embedding this with coping techniques for managing symptoms and helping to optimise quality of life. 
• Measure women’s unmet needs and quality of life after the initiation of the awareness campaign and pilot of the avatar web tool.
• Organise interactive seminars and an awareness campaign advocating for the wider use of tools like MET-GUIDE to address the unmet needs of women with MBC. 

The first phase of the project built upon the previous SPARC project of Europa Donna Cyprus (awarded in 2017), in which psychosocial and unmet needs of women living with MBC in Cyprus were studied through a series of focus group discussions. Based on these findings, the group wanted to further explore the unmet needs of MBC patients by surveying focus groups. In the second phase of this project and based on the findings, the web platform, "MET-GUIDE", was designed. It serves to inform patients about their care and therapeutic options, providing short interventions based on Acceptance and Commitment Therapy to optimise symptom management and quality of life. The platform is available in Greek and will be made available in English. 

Impact

Focus groups were carried out and needs of the patients were identified in the first phase of this project. The major unmet needs identified included the management of symptoms like fatigue, pain, appetite loss, but also more personal issues like sexuality and getting the right information regarding their treatment options. 

The tool “MET-GUIDE” has been developed and disseminated and piloted with a group of approximately 100 women who have benefited from the project. The group worked with Europa Donna Cyprus to design and deliver the project and enlisted patients from local care providers (American Medical Centre, Bank of Cyprus Oncology Centre, Breast Centre) to use the new tool and to provide further feedback.

The feedback from the initial cohort of patients has been further integrated into the tool to further improve the support provided to the patients. Meeting these unmet needs of MBC patients has been found to improve their quality of life and positively impact their response to treatment and survival.

UCY has worked closely with the Cyprus Parallel Parliament to advocate for the use of tools such as “MET-GUIDE” to improve the quality of life of women with MBC. It is anticipated that this project can also serve to support and improve the quality of life of MBC patients abroad. In the future, following the project, UCY aims to reach out to organisations in other countries to enable the tool to be used and adapted to these different contexts and cultural differences, allowing for more MBC patients to be supported. 

"The MET-GUIDE tool fills a gap on patient-centred care and can help women with MBC have a ‘friend’ who can comfort them and show them things that matter"

Stephanie Christodoulidou, Europa Donna Cyprus (partner and SPARC grantee 2017)

More about the project

• Organisation's website: University of Cyprus (UCY)
• Breast Cancer Centre of Cyprus
• MET-GUIDE

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