Assessment of Clinical and Psychological Needs of Patients With Metastatic Breast Cancer: Challenges and Gaps in Meeting Their Needs in Uganda
Authors: Ddungu Henry , Kumaketch Edward , Namisango Eva 
Published: October 2018

Purpose Uganda has one of the highest age-standardized incidence rates for breast cancer (38.3/100,000) occurring among women age 35 to 45 years. The disease is associated with increased biomedical and psychological demands on affected women and their families. Clinical and supportive care services are offered to patients with metastatic breast cancer (MBC) to meet their needs and improve survival and quality of life. However, the existence of challenges and barriers to health care access affect the satisfaction of the needs of patients with MBC and imply that available services cannot meet every clinical and psychological need these patients. No previous assessment has been done in Uganda of the clinical and psychological needs of patients with MBC. The aim of the current study was to generate data that can be used to increase awareness of the unmet clinical and psychological needs of patients with MBC and their families to inform advocacy strategies for supportive care services in Uganda. Methods We conducted interviews, in-depth interviews, focus group discussions, and document review. Results Patients with MBC (n = 67), survivors (n = 185), clinical providers (n = 24), family (n = 134), and VHT (n = 12) participated in this work. The patient’s most important needs include physical and daily living needs (relieving pain, 85.69%; nutrition and diet, 83.69%; wound management, 80.69%; help when tired, 74.6%; help with house cores, 73.19%); health system, information, and patient support (treatment with dignity, 86.6%; pleasant environment, 83.6%; sensitivity to feelings, 80.6%; counseling, 79.1%; choice of cancer specialists, 77.6%; treatment plan, 76.1%; respect for a patient’s opinion, 74.6%); and psychological (close family concerns, 79.1%; advice on faith, 79.6%; comforting when sad, 74.6%; positive outlook, 73.3%; how to disclose, 71.6%). Long waiting times, out-of-stock medicines, inadequate hospital amenities, family exclusion during patient review conversations, caregiver burnout, cost of care, limited funding, and spiritual, legal, and human resource shortages were needs and challenges identified by survivors, family caregivers, clinical providers, and policymakers. Polices on supportive care for patients with MBC are also unclear. Conclusion There exists a mismatch between patients with MBC, survivors, and health care providers with regard to knowledge of some of the needs of patients with MBC, particularly clinical-related information needs. Dialogue between patients with MBC, survivors, family caregivers, clinical providers, and VHTs is recommended to harmonize knowledge and perceptions of the needs of patients with MBC. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jco/site/ifc . No COIs from the authors.