Informed consent in cancer clinical care: Perspectives of healthcare professionals on information disclosure at a tertiary institution in Uganda.

INTRODUCTION: While there have been several studies examining the understanding and quality of informed consent in clinical trials of cancer therapies, there is limited empirical research on health practitioners' experiences on the informed consent process in cancer care, especially from low resource settings. This study explored health professionals' perspectives on information disclosure during the consenting process in cancer care. METHODS: A qualitative descriptive approach was used to collect data. Face to face interviews were conducted with 10 purposively selected healthcare professionals who were actively involved in soliciting informed consent at a cancer treatment centre in Uganda. A thematic approach was used to interpret the results. RESULTS: There were five key themes, and these included information disclosure to patients; assessment of patients' cancer awareness, treatment preferences and expectations; informed consent practices; barriers to optimal informed consent and information disclosure; and recommendations for improving the consenting process. All respondents appreciated the value of disclosing accurate information to patients to facilitate informed decision making. However, the informed consent process was deemed sub-optimal. Respondents asserted that patients should be the psychological wellbeing of patients should be protected by mentally preparing them before disclosing potentially distressing information. All healthcare professionals were appreciative of the central role the family plays in the consenting process. CONCLUSION: Overall, informed consent practices were not ideal because of the several challenges. Inadequate time is devoted to information disclosure and patient education; there is lack of privacy; and informed consent documentation is poor. There is a need for significant improvement in informed consent practices and healthcare professional-patient communication.

Challenges faced by cancer patients in Uganda: Implications for health systems strengthening in resource limited settings.

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.