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
References
[1]
Breast Cancer Initiative 2.5 (BCI2.5) on Behalf Ministry of Health Community Development Gender Elderly and Children of the United Republic of Tanzania (2017) Tanzania Breast Health Care Assessment 2017. An Assessment of Breast Cancer Early Detection, Diagnosis and Treatment in Tanzania.
https://ww5.komen.org/uploadedFiles/_Komen/Content/What_We_Do/Around_the_World/Africa/Tanzania-BHCA-2017.pdf
[2]
(2020) Global Cancer Observatory: Cancer Today. Tanzania, United Republic. International Agency for Research on Cancer.
https://gco.iarc.fr/today/data/factsheets/populations/834-tanzania-united-republic-of-fact-sheets.pdf
[3]
Jedy-Agba, E., McCormack, V., Adebamowo, C. and Dos-Santos-Silva, I. (2016) Stage at Diagnosis of Breast Cancer in Sub-Saharan Africa: A Systematic Review and Meta-Analysis. The Lancet Global Health, 4, e923-e935.
https://pubmed.ncbi.nlm.nih.gov/27855871
https://doi.org/10.1016/S2214-109X(16)30259-5
[4]
Nabawanuka, A., Galukande, M., Nalwoga, H. and Gakwaya, A. (2013) Metastatic Breast Cancer and Hormonal Receptor Status among a Group of Women in Sub Saharan Africa. The Annals of African Surgery, 10, 7-11.
https://doi.org/10.4314/ahs.v12i4.4
[5]
Mabula, J.B., Mchembe, M.D., Chalya, P.L. and Giiti, G. (2012) Stage at Diagnosis, Clinicopathological and Treatment Patterns of Breast Cancer at Bugando Medical Centre in North-Western Tanzania. Tanzania Journal of Health Research, 14, 269-279.
https://doi.org/10.4314/thrb.v14i4.6
[6]
Tucker, C.A., Pilar Martin, M. and Jones, R.B. (2017) Health Information Needs, Source Preferences and Engagement Behaviours of Women with Metastatic Breast Cancer across the Care Continuum: Protocol for a Scoping Review. BMJ Open, 7, e013619. https://doi.org/10.1136/bmjopen-2016-013619
[7]
Ibrahim, N.A. and Oludara, M.A. (2012) Socio-Demographic Factors and Reasons Associated with Delay in Breast Cancer Presentation: A Study in Nigerian Women. The Breast, 21, 416-418. https://doi.org/10.1016/j.breast.2012.02.006
[8]
Braun, V. and Clarke, V. (2006) Using Thematic Analysis in Psychology. Qualitative Research in Psychology, 3, 77-101. https://doi.org/10.1191/1478088706qp063oa
[9]
Nowell, L.S., Norris, J.M., White, D.E. and Moules, N.J. (2017) Thematic Analysis: Striving to Meet the Trustworthiness Criteria. International Journal of Qualitative Methods, 16, 1-13. https://doi.org/10.1177/1609406917733847
[10]
Kiger, M.E. and Varpio, L. (2020) Thematic Analysis of Qualitative Data: AMEE Guide No. 131. Medical Teacher, 42, 846-854.
https://doi.org/10.1080/0142159X.2020.1755030
[11]
Seah, D.S.E., Lin, N.U., Curley, C., Winer, E.P. and Partridge, A.H. (2014) Informational Needs and the Quality of Life of Patients in Their First Year after Metastatic Breast Cancer Diagnosis. Journal of Community and Supportive Oncology, 12, 347-354.
https://doi.org/10.12788/jcso.0077
[12]
Ravangard, R., et al. (2020) Health Information Seeking Behavior of Breast Cancer Patients: A Qualitative Study.
[13]
Nader, E.A., Kourie, H.R., Ghosn, M., El Karak, F., Kattan, J., Chahine, G., et al. (2016) Informational Needs of Women with Breast Cancer Treated with Chemotherapy. Asian Pacific Journal of Cancer Prevention, 17, 1797-1800.
https://doi.org/10.7314/APJCP.2016.17.4.1797
[14]
Shea-Budgell, M.A., Kostaras, X., Myhill, K.P. and Hagen, N.A. (2014) Information Needs and Sources of Information for Patients during Cancer Follow-Up. Current Oncology, 21, 165-173. https://doi.org/10.3747/co.21.1932
[15]
Mistry, A., Wilson, S., Priestman, T., Damery, S. and Haque, M. (2010) How Do the Information Needs of Cancer Patients Differ at Different Stages of the Cancer Journey? A Cross-Sectional Survey. JRSM Short Reports, 1, Article No. 30.
https://doi.org/10.1258/shorts.2010.010032
[16]
Tran, Y., Lamprell, K., Nic Giolla Easpaig, B., Arnolda, G. and Braithwaite, J. (2019) What Information Do Patients Want across Their Cancer Journeys? A Network Analysis of Cancer Patients’ Information Needs. Cancer Medicine, 8, 155-164.
https://doi.org/10.1002/cam4.1915
[17]
Chao, C.A., Huang, L., Visvanathan, K., Mwakatobe, K., Masalu, N. and Rositch, A.F. (2020) Understanding Women’s Perspectives on Breast Cancer Is Essential for Cancer Control: Knowledge, Risk Awareness, and Care-Seeking in Mwanza, Tanzania. BMC Public Health, 20, Article No. 930.
https://doi.org/10.1186/s12889-020-09010-y
[18]
Cumber, S.N., Nchanji, K.N. and Tsoka-Gwegweni, J.M. (2017) Breast Cancer among Women in Sub-Saharan Africa: Prevalence and a Situational Analysis. Southern African Journal of Gynaecological Oncology, 9, 35-37.
https://doi.org/10.1080/20742835.2017.1391467
[19]
Odigie, V.I., Tanaka, R., Yusufu, L.M.D., Gomna, A., Odigie, E.C., Dawotola, D.A., et al. (2010) Psychosocial Effects of Mastectomy on Married African Women in Northwestern Nigeria. Psycho-Oncology, 19, 893-897.
https://doi.org/10.1002/pon.1675
[20]
Kowalski, C., Lee, S.D., Ansmann, L., Wesselmann, S. and Pfaff, H. (2014) Meeting Patients’ Health Information Needs in Breast Cancer Center Hospitals—A Multilevel Analysis. BMC Health Services Research, 14, Article No. 601.
https://doi.org/10.1186/s12913-014-0601-6
[21]
Mutebi, M. and Edge, J. (2014) Stigma, Survivorship and Solutions: Addressing the Challenges of Living with Breast Cancer in Low-Resource Areas. South African Medical Journal, 104, Article No. 383.
https://doi.org/10.1111/j.1547-5069.1990.tb00225.x
[22]
Breast Cancer Patient Support Group.
https://www.cancercare.org/support_groups/43-breast_cancer_patient_support_group
[23]
The Importance of Breast Cancer Advocacy: Insights from the Community. Bristol Myers Squibb.
https://www.bms.com/life-and-science/science/importance-of-breast-cancer-advocacy-and-community-insights.html
[24]
Advocacy. National Breast Cancer Coalition.
https://www.stopbreastcancer.org/focus/advocacy/
[25]
UICC Cancer Advocates Program.
https://www.uicc.org/what-we-do/member-benefits/learning-and-development/cancer-advocates-programme
[26]
Patient Finds Purpose Advocating for Others with Metastatic Breast Cancer.
https://cancer.osu.edu/blog/patient-finds-purpose-advocating-for-others-with-metastatic-breast-cancer
[27]
Ganz, P.A. (1995) Advocating for the Woman with Breast Cancer. CA: A Cancer Journal for Clinicians, 45, 114-126. https://doi.org/10.3322/canjclin.45.2.114
