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.

Mortality and its associated factors in transfused patients at a tertiary hospital in Uganda.

Blood transfusion is life-saving but sometimes also associated with morbidity and mortality. There is limited data on mortality in patients transfused with whole blood in sub-Saharan Africa. We described the 30-day all-cause mortality and its associated factors in patients transfused with whole blood to inform appropriate clinical intervention and research priorities to mitigate potential risks. A retrospective study was performed on purposively sampled patients transfused with whole blood at the Uganda Cancer Institute (UCI) and Mulago hospital in the year 2018. Two thousand twelve patients with a median (IQR) age of 39 (28-54) years were enrolled over a four month period. There were 1,107 (55%) females. Isolated HIV related anaemia (228, 11.3%), gynaecological cancers (208, 10.3%), unexplained anaemia (186, 9.2%), gastrointestinal cancers (148, 7.4%), and kidney disease (141, 7.0%) were the commonest diagnoses. Most patients were transfused with only one unit of blood (n = 1232, 61.2%). The 30 day all-cause mortality rate was 25.2%. Factors associated with mortality were isolated HIV related anaemia (HR 3.2, 95% CI, 2.3-4.4), liver disease (HR 3.0, 95% CI, 2.0-4.5), kidney disease (HR 2.2, 95% CI, 1.5-3.3; p<0.01), cardiovascular disease (HR 2.9, 95% CI, 1.6-5.4; p<0.01), respiratory disease (HR 3.0, 95% CI 1.8-4.9; p<0.01), diabetes mellitus (HR 4.1, 95% CI, 2.3-7.4; p<0.01) and sepsis (HR 6.2, 95% CI 3.7-10.4; p<0.01). Transfusion with additional blood was associated with survival (HR 0.8, 95% CI 0.7-0.9, p<0.01). In conclusion, the 30-day all-cause mortality was higher than in the general inpatients. Factors associated with mortality were isolated HIV related anaemia, kidney disease, liver disease, respiratory disease, cardiovascular disease, diabetes mellitus and sepsis. Transfusion with additional blood was associated with survival. These findings require further prospective evaluation.

Haematological malignancies in sub-Saharan Africa: east Africa as an example for improving care.

Haematological malignancies account for almost 10% of all cancers diagnosed in sub-Saharan Africa, although the exact incidences and treatment outcomes are difficult to discern because population-based cancer registries in the region are still underdeveloped. More research on haematological malignancies in sub-Saharan Africa is required to establish whether these cancers have a natural history similar to those diagnosed in high-income countries, about which more is known. Several factors negatively affect the outcome of haematological malignancies in sub-Saharan Africa, showcasing a need for improved understanding of the clinicobiological profile of these cancers to facilitate prevention, early detection, diagnosis, and appropriate treatment through increased capacity building, infrastructure, community awareness, coordinated resource mobilisation, and collaboration across the world. The east African governments have pooled resources for common investments to tackle non-communicable diseases, developing the East Africa's Centres of Excellence for Skills and Tertiary Education project funded by the African Development Bank, an initiative that could be replicated for the care of haematological malignancies in other countries in sub-Saharan Africa. TRANSLATION: For the French translation of the abstract see Supplementary Materials section.

Characteristics and outcomes of patients with multiple myeloma at the Uganda Cancer Institute.

PURPOSE: Data on multiple myeloma (MM) in sub-Sahara Africa is scarce. In Uganda, there is a progressively increasing incidence of MM over the years. METHODS: We performed a retrospective study on 217 patients with MM at the UCI using purposive sampling method. The objectives of the study were to determine the clinical characteristics, treatment outcomes, 5 year overall survival and predictors of survival of patients with MM at the UCI from 01 January 2008 to 31 December 2012. RESULTS: There were 119 (54.8%) males; the mean(SD) age of the study population at presentation was 59(12.8) years; 183(84.3%) patients presented with bone pain, and 135 (61.9%) had skeletal pathology; 186(85.3%) were HIV negative, and 152(70%) had Durie-Salmon stage III. The median overall survival was 2.5 years, (95% CI, 0.393-0.595); factors significantly associated with worse survival were Durie-Salmon stage III disease, HR=5.9, 95% CI (1.61 - 21.74; P=0.007) and LDH >225 U/L HR=3.3, 95% CI (0.57 - 5.92; P=0.029). CONCLUSION: Most patients with multiple myeloma at the UCI were diagnosed at a relatively young age, presented with late stage disease and bone pain, and had a shorter survival time. Factors associated with worse survival were Durie-Salmon stage III and LDH >225 U/L.

Survival of patients with cancer associated thrombosis at the Uganda Cancer Institute.

BACKGROUND: The occurrence of venous thromboembolism (VTE) in patients with cancer leads to a reduced life expectancy. There is an increased incidence of cancer and its associated mortality in Uganda. We described the survival and characteristics of patients with cancer associated thrombosis (CAT) in a tertiary oncology centre in Uganda. METHODS: We performed a retrospective study on patients with CAT at the Uganda Cancer Institute (UCI) using a homogenous purposive sampling method. RESULTS: One hundred and eleven patients with documented VTE were included in the analysis. At entry, the mean age was 52.4 years, and 69 were female. Ninety eight had deep venous thrombosis, while 12 had pulmonary embolism. The most common cancer diagnoses were haematologic (30), gynaecologic (20) and prostate (17) cancers. Treatment regimens included anticoagulation with low-molecular weight heparin (LMWH) (72) and combined LMWH with warfarin (22). The median overall survival (OS) was 6.3 months, with a 1-year survival rate of 41.5%. Patients with significantly increased hazard of mortality were those with upper gastrointestinal (UGI) malignancies, colorectal and breast cancers. Patients with a body mass index of 25-29.9 kg/m2 (overweight) had a slightly reduced hazard of mortality. CONCLUSION: The OS of patients with CAT at the UCI is short. Most patients with CAT presented with advanced stage cancers and at a relatively young age. Patients with UGI, colorectal and breast cancers had increased hazards of mortality, whereas those who were overweight had a slight reduction in the hazard of mortality.

Outcomes of treatment with CHOP and EPOCH in patients with HIV associated NHL in a low resource setting.

BACKGROUND: The optimal chemotherapy regimen for treating HIV associated NHL in low resource settings is unknown. We conducted a retrospective study to describe survival rates, treatment response rates and adverse events in patients with HIV associated NHL treated with CHOP and dose adjusted-EPOCH regimens at the Uganda Cancer Institute. METHODS: A retrospective study of patients diagnosed with HIV and lymphoma and treated at the Uganda Cancer Institute from 2016 to 2018 was done. RESULTS: One hundred eight patients treated with CHOP and 12 patients treated with DA-EPOCH were analysed. Patients completing 6 or more cycles of chemotherapy were 51 (47%) in the CHOP group and 8 (67%) in the DA-EPOCH group. One year overall survival (OS) rate in patients treated with CHOP was 54.5% (95% CI, 42.8-64.8) and 80.2% (95% CI, 40.3-94.8) in those treated with DA-EPOCH. Factors associated with favourable survival were BMI 18.5-24.9 kg/m2, (p = 0.03) and completion of 6 or more cycles of chemotherapy, (p < 0.001). The overall response rate was 40% in the CHOP group and 59% in the DA-EPOCH group. Severe adverse events occurred in 19 (18%) patients in the CHOP group and 3 (25%) in the DA-EPOCH group; these were neutropenia (CHOP = 13, 12%; DA-EPOCH = 2, 17%), anaemia (CHOP = 12, 12%; DA-EPOCH = 1, 8%), thrombocytopenia (CHOP = 7, 6%; DA-EPOCH = 0), sepsis (CHOP = 1), treatment related death (DA-EPOCH = 1) and hepatic encephalopathy (CHOP = 1). CONCLUSION: Treatment of HIV associated NHL with curative intent using CHOP and infusional DA-EPOCH is feasible in low resource settings and associated with > 50% 1 year survival.

Ambient particulate matter air pollution in Mpererwe District, Kampala, Uganda: a pilot study.

Air quality in Kampala, the capital of Uganda, has deteriorated significantly in the past two decades. We made spot measurements in Mpererwe district for airborne particulate matter PM2.5 (fine particles) and coarse particles. PM was collected on Teflon-membrane filters and analyzed for mass, 51 elements, 3 anions, and 5 cations. Both fine and coarse particle concentrations were above 100 µg/m(3) in all the samples collected. Markers for crustal/soil (e.g., Si and Al) were the most abundant in the PM2.5 fraction, followed by primary combustion products from biomass burning and incinerator emissions (e.g., K and Cl). Over 90% of the measured PM2.5 mass can be explained by crustal species (41% and 59%) and carbonaceous aerosol (33%-55%). Crustal elements dominated the coarse particles collected from Kampala. The results of this pilot study are indicative of unhealthy air and suggest that exposure to ambient air in Kampala may increase the burden of environmentally induced cardiovascular, metabolic, and respiratory diseases including infections. Greater awareness and more extensive research are required to confirm our findings, to identify personal exposure and pollution sources, and to develop air quality management plans and policies to protect public health.

Splanchnic venous thrombosis driven by a constitutively activated JAK2 V617F philadelphia-negative myeloproliferative neoplasm: a case report.

INTRODUCTION: Splanchnic venous thrombosis (SVT) has varied etiology with Philadelphia-negative myeloproliferative neoplasms (MPNs) being the most frequent underlying prothrombotic factor. Hematological indices often remain within normal range because of portal hypertension and its sequelae, causing diagnostic challenges. The high frequency of JAK2 mutation among patients with SVT reinforces the diagnostic utility of JAK2V617F testing. CASE REPORT: We report a case of a 62-year-old black man with progressive abdominal swelling and features of decompensated chronic liver disease found to have SVT-portal vein thrombosis and how JAK2 V617F was useful in unmasking an underlying myeloproliferative neoplasm. CONCLUSION: A high index of suspicion for an underlying prothrombotic factor is critical for patients presenting with thrombosis in unusual sites. This is useful in prognostic stratification and patient outcomes. JAK2 mutation screening is now part of the standard diagnostic workup in SVT.