RESUMO
BACKGROUND: Uganda Cancer Institute (UCI), the only comprehensive cancer treatment center in Uganda, registers about 4000 new cancer patients a year. However, many cancer patients in Uganda never receive treatment due to a variety of challenges. We therefore conducted a study to identify and assess the challenges faced by cancer patients in Uganda. METHODS: A cross-sectional study conducted in April-May 2017 among adult cancer patients. 359 participants participated in an interviewer-administered survey. We used stratified random sampling to select the study participants. Data was analyzed in SPSS Statistics 24. RESULTS: 35 % of the patients delayed initiating cancer treatment and 41 % missed medical appointments along their care journey. Delayed and missed appointments were mainly due to lack of money for cancer medicines, transportation and accommodation. Patients also expressed challenges with side effects of cancer treatment: 52 % sought help from health workers when they experienced side effects; 14 % used alternative medicine; and 21 % did not inform anyone. In addition, 55 % of the participants had limited knowledge about their disease and treatment. Other challenges when at UCI included: being hungry and thirsty throughout the day, long waiting hours, not having a resting place, not understanding what comes next, and having their records lost by hospital staff. CONCLUSION: Challenges faced by cancer patients in Uganda result in enormous delays in initiation and continuation of cancer treatment. These challenges are often a result of the poor social-economic status of the patients; inadequate infrastructure for cancer care; and inefficiencies in the health care system. POLICY SUMMARY: To improve the experience of patients, the National Cancer Control Plan should consider establishing regional cancer centers; creating a reliable supply of cancer medicines; and integrating navigation programmes into cancer care. Strengthening the whole health system, in relation to cancer service delivery, should remain a top priority for Uganda and other resource limited settings.