Abstract
Background and Objective: Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Currently, many MBC patients connect with each other via online support group in view of the constant availability of support and rapid information exchange. The objective of this study is to determine the unmet needs of women with MBC from an online support group. Material and Methods: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed. Results: Three themes were generated, (1) unmet information needs (2) unmet financial needs (3) unmet support needs. Women needed information on side effects of treatment, new treatment options and availability of clinical trials. Although Malaysia has universal health care coverage, access to treatment remains a major challenge. When treatment was not available in the public hospitals, or waiting lists were too long, women were forced to seek treatment in private hospitals, incurring financial catastrophe. Insufficient private insurance and inadequate social security payments force many women to consider stopping treatment. Women felt that they were not getting support from their clinicians in the public sector, who were quick to stop active treatment and advise palliation. On the other hand, clinicians in the private sector advise expensive treatment beyond the financial capability of the patients. Women with families also face the challenge of managing their family and household in addition to coping with their illness. Conclusions: There is a need for healthcare professionals, policy makers, and civil society to better address the needs of MBC patients through patient-centered, multidisciplinary and multi-organizational collaboration.
Highlights
Metastatic breast cancer (MBC) is a common presentation in low-and middle-income countries (LMICs) due to lack of knowledge, fear and belief in traditional medicine [1].10% of Malaysian women with breast cancer were metastatic at diagnosis
There is a need for healthcare professionals, policy makers, and civil society to better address the needs of metastatic breast cancer (MBC) patients through patient-centered, multidisciplinary and multi-organizational collaboration
How do these women with MBC deal with their diagnosis, symptoms of metastases, side effects of different treatments, and the increasing cost of cancer care? Women with MBC often seek help from online support groups in addition to their clinicians to address their unmet needs during this period of uncertainty [8,9]
Summary
Metastatic breast cancer (MBC) is a common presentation in low-and middle-income countries (LMICs) due to lack of knowledge, fear and belief in traditional medicine [1].10% of Malaysian women with breast cancer were metastatic at diagnosis. The majority of breast cancer support groups deal with women with early breast cancer, and are ill-equipped to cater for women with MBC How do these women with MBC deal with their diagnosis, symptoms of metastases, side effects of different treatments, and the increasing cost of cancer care? Despite the increasing treatment options for patients with metastatic breast cancer (MBC), unmet needs remain common, especially in low and middle-income countries where resources are limited and MBC patients face many challenges. They often join support groups to cope with their unmet needs. Material and Methods: Messages in an online support group of twenty-two MBC patients over a period of three years from August 2016 till August 2019 were thematically analyzed
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