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.

A qualitative study on informed consent decision-making at two tertiary hospitals in Uganda: Experiences of patients undergoing emergency surgery and their next of kin.

Background: In emergency situations, patients and their next of kin must make complex medical and ethical decisions in a quick and timely way. Objectives: To describe the decision-making process during informed consent for emergency surgery among patients and the next of kin of patients who have undergone emergency surgery. Methods: Consecutive sampling of 39 participants and in-depth semi-structured interviews were conducted at two tertiary teaching hospitals in Uganda. There were 22 patients and 17 next of kin of patients who had undergone emergency surgery within 24-72 h. Responses about decision-making were coded into themes using the social constructivist theory and phenomenological approach. Results: There were four emergent themes; decision-makers, people consulted, documentation of the consent and factors influencing decision-making. Most patients and next of kin made decisions on their own and documented the consent for themselves. Other family members and doctors were consulted during the decision-making process. Decision-making was influenced by reassurance of good outcomes of surgery and disclosure by the doctors. Conclusion: Decisions were made collaboratively with the patient at the center but with input of health personnel, the next of kin and other family members. A communitarian approach combined with shared decision-making between the doctor and the patient and next of kin with adequate discussion and disclosure of information in simple language would improve decision-making for patients and their next of kin.

A comparison of oral bacteriome isolated from periodontal pockets of participants with or without diabetes mellitus in Uganda: a case control study.

OBJECTIVE: Diabetes mellitus predisposes patients to increased incidence and severe forms of periodontal disease. Currently, information on the bacterial diversity of patients with diabetes mellitus and periodontitis in Uganda is scanty. This study set out to describe the bacteria associated with periodontitis in patients with diabetes mellitus in Uganda, as part of a larger study describing the association between periodontal disease and diabetes mellitus. RESULTS: This was a case control involving 45 samples of gingival crevicular fluid collected from participants with periodontitis, the cases being 26 participants with diabetes mellitus and controls 19 participants without diabetes mellitus. Sequencing using the 16s Oxford nanopore long read protocol was followed by a bioinformatics analysis pipeline for alpha and beta diversity indices in the two groups. Multivariate tests were done to determine the differences in the bacterial composition in the two groups. Of the 739 Operational Taxonomic Units and 500 phyla identified, 37.9% (280/739) were from participants with diabetes mellitus. Analysis of beta diversity revealed a dissimilarity between the two study groups (CAP score = 0) with a significant association noted between periodontitis and the subgingival bacteria (P = 0.001). Diabetes mellitus reduced the quantity and altered the composition of the subgingival microbiome in the study participants.

Quality of life of patients with traumatic spinal cord injuries: a cross-sectional study at a tertiary hospital in Uganda.

Background: The study aimed to assess the perceived quality of life of patients with traumatic spinal cord injuries. Methodology: This was a cross sectional study conducted in the Spine Unit of a tertiary hospital in Uganda. The study population comprised of patients with spinal cord injuries. Data were collected using the WHO Quality of Life Brief questionnaire and Functional Independence Measure tool. Results: 103 patients participated in the study, most were male (73.8%), and had a mean age of 37.7 years. Most participants were married (57.3%), unemployed (72.8%) and had no steady source of income (62.1%). Road traffic accidents accounted for most injuries (59.2%). The mean duration since injury was 20.5 months. Most participants (58.3%) had incomplete spinal cord injuries and 84.5% had complications. The perceived overall quality of life was poor in 87.4% of patients. Being employed (p= 0.02), the presence of complications (p= 0.03), and injury severity (p= 0.003) significantly affected quality of life. Functional independent measure scores were significantly better in individuals less severe injuries and those with lumbar level of injury with mean scores of 113.1±8.9 and 99.9±15.3 respectively. Conclusion: The overall self-reported quality of life among patients with traumatic spinal cord injury was generally poor.