In Uganda, breast cancer is the second most common type of cancer. Despite growing efforts to improve awareness and early detection in East Africa, according to the Uganda Women’s Cancer Support Organisation (UWOCASO), over 75% of breast cancer patients in the region present with late stage disease. Also according to UWOCASO, evidence suggests that palliative care and psychological support improve symptom control and quality of life, however, metastatic breast cancer (MBC) patients in East Africa often do not have access to these services due to barriers that range from health care system issues to social stigma and financial hardship. In 2016, UWOCASO launched a new project aiming at identifying the challenges faced by women with MBC in Uganda, help increase awareness of their unique needs and to launch a patient navigation programme.
UWOCASO is a group of breast cancer survivors whose mission is to fight cancer by empowering women with cancer, their families and communities through provision of appropriate evidence-based information, best practices, awareness, supportive care and advocacy activities.
“The SPARC project opened doors for partners to work with UWOCASO… [We have] partnered with the American Cancer Society and the Uganda Cancer Institute (UCI) to develop a comprehensive patient navigation program. As the project leader, I was empowered to lead the research project. It was exciting to generate evidence that partners can trust and use for intervention.”
The project worked to assess knowledge of clinical and psychological needs of metastatic breast cancer patients’ challenges and gaps in meeting their needs in Uganda among clinicians, family care providers, policy makers and Advocates. The project was completed within the set timelines having interviewed over four hundred (400) participants to evaluate their understanding of the unmet needs of MBC patients. At the end of the project an evaluation was done by key stakeholders during a research dissemination workshop. During this meeting UWOCASO engaged and discussed findings and practical recommendations for intervention.
UWOCASO was awarded a SPARC MBC Challenge grant in 2015 to implement a new project in partnership with the Uganda Cancer Institute. The project worked to assess knowledge of clinical and psychological needs of metastatic breast cancer patients’ challenges and gaps in meeting their needs in Uganda among clinicians, family care providers, policy makers and Advocates. The Uganda Cancer Institute was a vital collaborator for UWOCASO as their cancer treatment centre was providing specialised MBC care and linking patients to trained volunteers for psychosocial support resources. In addition, the Uganda Cancer Institute played an advisory role regarding the best practices for information flow between volunteers, clinicians and policy makers.
A quantitative study (n=400) was conducted to assess knowledge of clinical and psychological needs of MBC patients in eleven sites including major hospitals, hospices and support groups. Participants recruited included MBC patients, cancer survivors, family caregivers, and clinicians. The results highlighted three main categories of MBC patients’ needs, those relating to physical and daily living; information and patient support; and psychological needs. Another study was conducted by interviews with policy makers, clinician and advocates. This study identified challenges such as pain, long waiting times, insufficient stocks of medicine, inadequate hospital facilities, caregiver burnout, cost of care, stigma and discrimination.
The study also revealed a mismatch between priorities given by MBC patients, families survivors versus health care providers. For instance, “Providing patients with more choices of cancer specialists” was rated as an important need for 77.6% of patients, versus 41.7% of clinical staff.
The key findings of these studies were disseminated through radio and television programs as well as through a workshop and panel discussion.
In a pilot project, patient navigators were trained using the Bio-Psychosocial (BPS) model of patient navigation. This model uses a BPS tool to assess a patient’s biomedical, psychological and spiritual concerns, as well as family and social support. MBC patients were assigned a patient navigator who addressed both clinical and psychological needs by sharing information on available services, coordinating service providers, and referring them to appropriate resources. Monthly support group meetings were also held for patients, their families and their caregivers.
A meeting was held to communicate key research findings to local stakeholders and partners on April 2017 in Kampala, Uganda. UWOCASO also organised a workshop in which key stakeholders and partners participated, attended by the Ministry of Health, Ministry of Finance Planning and Economic Development, PATH Uganda, the American Cancer Society, and all major hospitals amongst others. A panel of experts discussed the key findings of the research as well as the implications for cancer control in the country. Moreover, they drafted a set of recommendation for interventions. Further dissemination of the research findings took place via 12 radio and four television programmes.
In total, 16 patient navigators were trained. In the 3 years following the start of the SPARC project, a total of 45 navigators have been trained together and UWOCASO plans to increase this number to 200 navigators.
In the future, UWOCASO plans to set up a toll-free call centre for MBC patients and their families.
Organisation's website: Uganda Women’s Cancer Support Organisation (UWOCASO)
Video interview: "UWOCASO- SPARC MBC Challenge Grant Awardee", with Gertrude Nakigudde, Executive Director of UWOCASO
UICC Article: "SPARC grant awardees - Meet Gertrude from Uganda"
 GLOBOCAN 2018
(Information from the project description and context is compiled from the SPARC reports)