Needs and Opportunities for Information in Patients with Metastatic Breast Cancer Attending a Tertiary Hospital in Tanzania: Qualitative Study

Abstract

Background: The majority of breast cancer patients in Tanzania present with advanced disease, and a significant proportion has metastatic breast cancer (MBC) on presentation or develops it during the course of their follow-up. With few treatment options to choose from, such patients often benefit from empathic support and access to information to help them make treatment decisions based on their individual circumstances and needs. Patients with MBC have been shown to present with unique physical, social and psychological needs that require additional time, counselling and availability of health care providers in addition to the routine options available to other patients. In resource-limited settings, the needs of such patients are often unknown and unaddressed, which adds to the anxiety associated with the diagnosis and its treatment. Materials and methods: This descriptive qualitative study was conducted using 3 focus group discussions with a total of 17 participants with metastatic breast cancer (MBC) attending Ocean Road Cancer Institute in Dar es Salaam, Tanzania. Participants were purposively selected for the study from outpatient clinics and inpatient wards. A semi-structured FGD guide was used to moderate discussions and analysis was done using a thematic approach. Results: The median age of participants was 51 (range 33 - 81 years) with an average of 4 months (range 1 - 12 months) from diagnosis of BC to the interview. 4 (24%) were diagnosed with MBC on first presentation (denovo). Participants spoke about the importance of accurate BC-related information in allowing timely referral and treatment both in the community and within the health system. They recognized the role of mass and social media in increasing awareness about BC and identified myths surrounding cancer treatment especially mastectomy. Correct and timely information at points of care, through media platforms and via ambassadors/patient support groups was perceived as a means to avoiding delays and securing early and effective treatment. Conclusion: Patients with MBC in Tanzania have many unmet informational needs in relation to their disease. Accurate BC-related information is important in allowing early detection and diagnosis. At the community level, provision of information through established media platforms and the use of patient advocates may help to enable early referral and treatment of patients. Keywords: Metastatic Breast Cancer, Information, Needs, Qualitative.