Women with metastatic breast cancer (MBC) have different needs and experiences compared to women with earlier stages of breast cancer. According to Europa Donna Cyprus, MBC patients’ experiences in Cyprus are often overlooked and rarely discussed due to a lack of awareness, stigma and cultural taboos. Even though high-quality medical and social services are available for cancer patients and many programmes address primary breast cancer, there are gaps regarding the care of MBC patients. To better understand and increase awareness about the situation of MBC patients, Europa Donna Cyprus conducted a research project to identify their unmet needs. Results of this study are being disseminated via awareness campaigns across the county.
Europa Donna Cyprus is one of the affiliated organisations of EUROPA DONNA – The European Breast Cancer Coalition, whose members are affiliated groups from 47 European countries. Europa Donna Cyprus was established in 2000 to raise awareness in the Cypriot population around breast cancer in terms of prevention, early detection and specialised treatment. Europa Donna Cyprus also advocates for patients’ needs and rights in their country.
In 2017, Europa Donna Cyprus was awarded a SPARC MBC Challenge grant for their project “Assessing the needs and the quality of life of MBC patients in Cyprus to increase awareness”.
The project was based on a collaboration between researchers from Europa Donna Cyprus, the Bank of Cyprus Oncology Centre, and the University of Nicosia. In this project, a survey was conducted to investigate the psychosocial needs of women living with MBC, which generated a database of women’s experiences.
MBC patients were recruited from throughout Cyprus and a mixed methods approach was used. In the first phase of the study, MBC patients answered a quality of life questionnaire and, in the second phase, they were invited to take part in individual interviews regarding their experience of living with MBC. Data was analysed using the interpretive phenomenological analysis method.
Major findings from the study on 46 Cypriot women living with MBC reported an important financial burden of the illness as only 64% of participants received a disease-related benefits and only 7% of participants were earning a salary at the time of the study. The study also showed that the main problems that the participants faced in their daily lives included sleep disorders, difficulties in managing their emotions, lack of help with housework and grocery shopping, problems in their love life as well as anxiety and depression.
The results of the study were disseminated through an awareness campaign including the production of leaflets and booklets, and a press conference. The highlight of the awareness campaign was a conference entitled “Knowledge, Strength, Hope” which had 150 attendees and participants. Dr Christina Yiannaki, permanent secretary of the Greek Ministry of Health, spoke at the conference along with Mrs Stella Kyriakidou, the current European commissioner for health and food safety as well as chairwoman of Europa Donna Cyprus.
The first database of psychosocial needs of MBC patients in Cyprus was created through this project, including a collection of MBC patients’ experiences via qualitative interviews. The project has strengthened the relationship between Europa Donna Cyprus and local health service providers, which has resulted in an increase of referrals of MBC patients towards Europa Donna Cyprus for patient support.
Printed information materials for MBC patients have been distributed in Greek, Turkish and English and a national awareness campaign was launched in June 2019. The “Knowledge, Strength, Hope” conference in September 2019 received extensive media coverage (internet news sites, radio and TV) and through the presentation of the study’s major findings encouraged policy makers to provide higher-quality care for MBC patients.
The project established a local network of institutions and researchers, some of whom plan to conduct future research on MBC patients in Cyprus using the data obtained from the project as a baseline. One of these projects includes the 2019 SPARC grantee “University of Cyprus” and their project “Guiding metastatic breast cancer women after diagnosis through an online platform”.
(Information from the project description and context is compiled from the SPARC reports)
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