e23249 Background: Process mapping is a low-cost, low-technology approach that can be used to understand and improve clinical processes. It is particularly useful for improving clinical care for patients receiving cancer treatment in resource-limited settings. Neutropenic fever is associated with particularly high rates of mortality, particularly for people receiving cancer treatment in sub-Saharan Africa. In this study, we used process mapping to identify barriers to antibiotic delivery and understand ways in which to improve the antibiotic delivery process at the Uganda Cancer Institute (UCI) in Kampala, Uganda. Methods: In our study, we used a five-phase process mapping framework to build a multidisciplinary process mapping team, develop an antibiotic delivery process map, identify barriers to antibiotic delivery, and begin the process by which to prioritize the barriers to care that should be addressed using implementation strategies. Throughout this framework, we used focus discussion groups as the basis for data collection and analyzed the process map using low-cost supplies and open-access software. Results: From March 2023 – May 2024, we conducted a series of 13 focus discussion groups to develop the process map and 13 additional focus groups to identify barriers to antibiotic delivery in a resource-limited setting. Frequently identified barriers included challenges with communication between team members, limited access to appropriate antibiotics, and the need for patient family members to travel to outside pharmacies to procure medications. Conclusions: Process mapping is a simple, low-cost way to understand the healthcare delivery system and identify areas in which it can be improved. In our study, we were able to use process mapping to understand the antibiotic delivery system for a cancer center in Uganda. The process mapping framework can also be used to understand and improve other cancer delivery processes for patients receiving treatment in resource-limited settings.
BACKGROUND:In many low- and middle-income countries, expanding access to cancer services has been a major priority. Yet, patient outcomes increasingly depend not only on whether services exist but on how care is organized, documented, and coordinated within overstretched systems. ASCO's Quality Oncology Practice Initiative (QOPI) has shown that structured quality measurement is feasible in resource-limited settings (RLSs), but less attention has been given to how such frameworks can be sustained without adding pressure to already burdened clinical teams. OBJECTIVE:To describe how the ASCO QOPI Resource-Limited Setting (RLS) track, implemented through a lean, stepwise approach, can generate real and sustained institutional improvements in a resource-constrained oncology setting in sub-Saharan Africa. METHODS:Drawing on implementation experience across African oncology programs, this analysis applies a lean lens. Lean is used here as an approach that focuses on simplifying processes, reducing unnecessary steps, and introducing changes in stages. The analysis examines how QOPI RLS was introduced in a stepwise fashion and integrated into routine care. The three-tier structure is analyzed as a sequencing strategy that stabilizes core processes before expanding measurement to more complex domains. Operational examples illustrate how QOPI evolved from a documentation exercise into an embedded governance tool. RESULTS:A staged and lean-informed implementation transformed QOPI from a reporting framework into an organizing system for care delivery. Initial focus on essential processes such as documentation and treatment planning established a reliable baseline. Subsequent expansion made previously hidden gaps in safety, coordination, and continuity of care visible, allowing targeted improvements without overloading clinical workflows. Over time, quality activities became embedded within routine practice, supporting more consistent delivery of systemic therapies and strengthening institutional capability. As systems matured, these processes also created a foundation for more complex functions, including coordination across the patient pathway and readiness for clinical trial implementation. CONCLUSION:Structured, stepwise quality approaches can strengthen oncology care in RLSs by improving the reliability of core processes. This offers a practical pathway for applying global standards and improving day-to-day care across diverse health systems.
By 2030, an estimated 75% of cancer deaths will occur in low- and middle-income countries (LMICs). Weak surveillance systems and limited research infrastructure often hide the true magnitude of this burden. Thus, independent, locally led research is essential for generating high-quality data, addressing regional disease patterns, and informing context-specific strategies for cancer control. Low national investment, heavy reliance on industry-sponsored trials, and a scarcity of trained clinician-scientists hinder independent cancer research in LMICs. In this narrative review, we synthesize the published literature and present a descriptive analysis of oncology trials registered on ClinicalTrials.gov (accessed July 2025), categorized by country, funding source, and tumor site and normalized to disease burden, drawing on illustrative examples from Africa, Asia, and Latin America. We highlight the transformative impact of context-sensitive research initiatives, explore disparities in sponsorship by country and tumor type, and outline ways to strengthen the research infrastructure. These include the establishment of population-based cancer registries, regional funding mechanisms, streamlined regulatory frameworks, and workforce development through formal research training and protected time. Finally, we propose strategies to enhance international collaboration and amplify LMIC participation in setting global cancer research priorities.
Introduction Cancer burden is rising in Uganda, as in many low- and middle-income countries (LMICs), with most patients presenting late due to limited access to diagnostic and treatment services. Sustained government investment, strengthened by the Uganda Cancer Institute Act of 2016, has enabled development of a comprehensive cancer care system, including palliative care and population-based cancer registration. This study examines trends in cancer outcomes at the Uganda Cancer Institute (UCI), highlighting the impact of public financing and the role of clinical and sociodemographic factors in shaping cancer care. Methods We reviewed patient records at UCI from January 2020 to December 2024. The study population included all adult patients with confirmed diagnoses of breast, prostate, Kaposi sarcoma (KS), cervix, and esophageal cancer. Descriptive statistics summarized sociodemographic and disease-related variables, while mortality-to-incidence ratios (MIRs) were calculated as a proxy for survival. MIRs were modelled over five years using beta regression with a logit link, adjusting for clinical and sociodemographic factors as well as public funding. Analyses were conducted in Stata (v19) and R (v4.5.0) using anonymized Electronic Medical Records data Results During the study period, 12,438 new cancer patients were registered. Cervix (29.4%), breast (24.5%), prostate (21.4%), esophagus (16.2%), and KS (8.5%) were the most common cancers. Prostate cancer had the lowest MIR (6.3%), followed by KS (11.5%), cervical (14%), breast (23%), and esophageal cancer (33%). Living outside metropolitan Kampala was associated with higher MIR (β = 0.108, p < 0.001), while HIV-positive status increased MIR (β = 0.082, p = 0.012). Diagnosis site type was strongly predictive, and higher government investment was consistently associated with reduced MIRs. Conclusion Sustained public investment in cancer care at UCI has led to improved outcomes, including increased survival and reduced mortality. These findings demonstrate that deliberate investment in cancer care is cost-effective in LMICs and can serve as a model for broader health system strengthening. Expansion through comprehensive cancer control programs integrating prevention, early detection, and referral mechanisms is essential
The World Health Organization recommends high-risk human papillomavirus (hrHPV) testing based on genotyping levels, ultimately supporting countries in selecting context-appropriate strategies to prevent cervical cancer in the general population of women. However, hrHPV genotype prevalence, distribution and oncogenic characteristics vary geographically. We studied the distribution of hrHPV genotypes and their relation to screening outcomes among women in rural Uganda. Eligible women aged 30–49 years self-collected vaginal samples, which were tested using GeneXpert® HPV. Specific genotypes were recorded as positive or negative. All hrHPV-positive women were invited to visual assessment for treatment, with or without visual inspection with acetic acid, and treated accordingly without histopathology. We enrolled 7126 women: 1800 (25·3
Antimicrobial resistance (AMR) is a global health concern. Cancer patients are 1.5–2 times more likely to be affected by AMR than other patient groups. This policy brief, informed by microbiological studies conducted at the Uganda Cancer Institute since 2014, presents key recommendations and implementation strategies for the management of bacterial infections in cancer patients in sub-Saharan Africa (SSA). Our recommendations include strengthening AMR surveillance, implementing context-specific infection prevention and control and antimicrobial stewardship programs, and raising awareness of AMR in cancer in the health sector and community in SSA. A collaborative multidisciplinary approach which includes infectious diseases expertise is required to effectively implement health policies and guidelines. Proactive and effective health policies which address AMR in cancer are critical in cancer centers in SSA.
Background There is limited research on cancer screening, prevention and treatment in the remote areas of Northeastern Uganda. Specifically, there is limited research presenting cancer control stakeholder perspectives in remote settings, whereas stakeholders' perspectives are critical for an engaged participatory approach to cancer control. This study therefore aimed to establish the community (patients, caretakers, opinion leaders, health managers and policy makers) perspectives on cancer surveillance, prevention, treatment and identify priorities for cancer research in Northeastern Uganda. Methods This qualitative research was part of a stakeholder's consultation on cancer research priorities in Northeastern Uganda for Wellcome Trust research grant application, conducted by a consortium of research partners. Six semi-structured Key Informant Interviews (KIIs), two focus group discussions (FGDs) and one community dialogue meeting were conducted between July and August 2025. Thematic data analysis was conducted to identify emergent themes from the interviews. Findings are presented using the key emergent themes, supporting quotes, and are presented in tables and text. This study is reported in accordance with Consolidated Criteria for Reporting Qualitative Research (COREQ). Key Findings There was delayed diagnosis in most cases for cancer patients. After the cancer diagnosis, patients were referred to Mulago Hospital, approximately 300Km away from their homes for further treatment, with many hesitations and incapacity to go to Mulago due to many social and economic challenges. There is no stand-alone cancer surveillance system in the country and currently it depends on health facility data which have lots of weaknesses including incompleteness and inaccuracy. Health facilities are ill-prepared to respond to the growing burden of cancers. Priorities for cancer research include epidemiology and etiology of cancer and a focus on population-based registry for unique populations in Uganda and strengthening cancer surveillance systems. Conclusion This study highlights the importance of an engaged approach based on Participatory Action Research theory to identify problems. Through this approach, the research team was able to accurately understand the research context, identify research issues, and priorities. Priorities for cancer research identified by this study include epidemiology and etiology of cancer, including the incidence studies and geographical mapping of these cancers, conducting cancer disease surveillance at the landing site and investigating the contribution of the locally available foods and environment to cancers. There is need for community sensitization and screening for cancers in the entire region. Involvement of community team leaders such as village health teams (VHTs), local council I (LCIs), traditional and church leaders in cancer surveillance should be encouraged and the community case definitions of common cancers should be refined and the capacity of the community workers (VHTs) built to detect cancers at community level. Through this preliminary research, the groundwork for science anchored on the realities of the affected people has been firmly laid upon which science can build on to solve the problem in a sustainable and equitable way.
In resource-limited settings, healthcare providers face unique structural barriers to antibiotic delivery. Process mapping (PM) is a low-cost, low-technology approach used to understand the antibiotic delivery process and systematically identify barriers to timely antibiotic initiation. In this paper, we will use a 5-phase PM framework to provide the readers with a guide to developing antibiotic delivery process maps, identifying barriers to antibiotic delivery, and prioritizing the order in which these barriers should be addressed. We will then use our experience at the Uganda Cancer Institute in Kampala, Uganda as a case study to describe how we used PM to identify barriers to antimicrobial delivery for patients with neutropenic fever. We will also provide information about how to use low-cost supplies and open-access software to develop and analyze the process map. By the end of the paper, the reader will have the necessary tools to develop and analyze their own antibiotic delivery process maps. This will allow the reader to systematically identify barriers to antimicrobial delivery and understand how to prioritize which barriers to address using targeted interventions.
OBJECTIVES:Cervical cancer is the most prevalent cancer in Uganda, posing a significant burden with high mortality rates. Early detection through screening is crucial to reduce cervical cancer mortality. This study aimed to investigate the awareness, knowledge, and attitudes toward cervical cancer and its screening among residents in the central and western regions of Uganda. STUDY DESIGN:Cross-sectional study. METHODS:A cross-sectional study was conducted through face-to-face interviews using a structured questionnaire, during October and November 2023 in Kampala City, Mbarara City, and Mbarara District. A total of 2000 men and women aged ≥20 years participated in the study. RESULTS:Among the respondents, 95 % were aware of cervical cancer, 85.1 % knew about cervical cancer screening, 37.8 % had heard of the human papillomavirus (HPV), and only 18.9 % recognized HPV as a major risk factor. Among females, 35 % had undergone cervical cancer screening. The most significant barrier preventing access to screening was a lack of knowledge (74.1 %). More than half of the respondents considered cervical cancer to be a fatal disease (52.9 %), and 93.7 % of females expressed willingness to undergo screening if provided for free. CONCLUSION:While awareness of cervical cancer and its screening was high, knowledge of HPV and actual cervical cancer screening rates were low, despite a high willingness to undergo screening. Increased investment in education and awareness campaigns, along with an organized cervical cancer screening program, is warranted to promote screening and reduce the cervical cancer burden in Uganda.
PURPOSEHepatocellular carcinoma (HCC) is common and deadly in sub-Saharan Africa, where advanced imaging techniques, such as computerized tomography and magnetic resonance imaging, are scarce. The purpose of this study was to develop a pragmatic HCC diagnostic strategy for such settings.METHODSWe evaluated standardized protocol-collected data on clinical, ultrasonographic, biochemical, and pathological criteria in a multisite study of 649 suspected HCC cases in Uganda. Participants underwent standardized interviews, clinical assessments, and ultrasound examinations by trained staff with alpha-fetoprotein (AFP) testing at a central laboratory, and pathology was obtained for selected participants. Concordance analysis and percentage-confirmed yield using different HCC case definitions were performed, with survival follow-up as a validation measure.RESULTSThe median age was 45 years, 68% were male, and 45% had chronic hepatitis B infection. Ultrasonographic, biochemical (AFP), and pathological definitions confirmed 91%, 57%, and 17% of clinically defined HCC cases, respectively. The median survival after diagnosis was 46 days. An integrated HCC case definition that combined clinical criteria with one confirmatory test increased the percentage-confirmed yield by 3.7% (ultrasonographic), 37.7% (biochemical), and 77.7% (pathologic) over the clinical definition alone. Yield from AFP or pathology beyond ultrasound was minimal. Survival did not differ appreciably by HCC case definition. This integrated HCC case definition maintained diagnostic rigor while maximizing yield.CONCLUSIONWe propose an integrated HCC case definition as a pragmatic, resource-adaptable approach for clinical diagnosis and research in sub-Saharan Africa. This definition can be readily implemented and can support regional collaborative efforts to develop novel diagnostics and improved treatments to ameliorate the heavy HCC burden.
PURPOSEPatients with diffuse large B-cell lymphoma (DLBCL) who are treated in low-resource settings have inferior outcomes compared with those in high-resource settings. Rituximab, an anti-CD20 monoclonal antibody, when combined with chemotherapy, improves overall survival (OS) for DLBCL. However, in part due to the limited availability of infusion centers in low-resource countries, rituximab is rarely used. Subcutaneous rituximab (sqR) is a potential solution; however, its safety and efficacy have not been tested in low-income countries.METHODSThis open-label phase I study enrolled patients 18 years or older with newly diagnosed DLBCL. The first cohort (n = 6) received intravenous rituximab plus CHOP. This cohort received sqR for subsequent cycles. The second cohort (n = 12) received sqR plus CHOP for all cycles. Safety and tolerability were evaluated; secondary outcomes included response rates and treatment completion.RESULTSBetween October 25, 2019, and October 7, 2022, 18 patients, with a median age of 36.5 years, were enrolled; 10 were male, and 10 presented with advanced-stage disease. The most common hematologic toxicity was neutropenia (n = 9, 50%). Fifteen of the 18 participants completed treatment; 14 (93.3%) patients achieved a complete response, and one patient (6.7%) had a partial response. The OS and progression-free survival (PFS) at 12 months were 83% (95% CI, 68 to 100) and 67% (95% CI, 48 to 92), respectively. The OS and PFS at 24 months were 66% (95% CI, 47 to 92) and 67% (95% CI, 48 to 92), respectively.CONCLUSIONAs demonstrated in other parts of the world, sqR together with CHOP was safe, well-tolerated, and efficacious among Ugandan patients with DLBCL. The very high OS rates are nearly double those of historical controls and comparable with outcomes expected in resource-rich settings. This study demonstrated the feasibility, safety, and efficacy of sqR-CHOP, increased the research infrastructure in Uganda, and will improve care in other resource-limited settings.
PURPOSECervical cancer remains a significant public health burden, especially in sub-Saharan Africa. The waiting time and treatment duration are key indicators of quality in oncology care, and guidelines recommend that chemoradiation for patients with locally advanced cervical cancer (LACC) should be completed within 8 weeks. This study aimed to quantify waiting times and treatment durations for LACC at the Uganda Cancer Institute and identify bottlenecks in the radiotherapy treatment pathway.MATERIALS AND METHODSThis prospective study involved 196 patients with LACC. The department’s treatment protocol for LACC allows either conventional fractionated radiotherapy (CFRT) at 50 Gy/25# or hypofractionated radiotherapy (HFRT) at 45 Gy/15#, followed by brachytherapy at 24 Gy/3#. Nine key treatment milestones were documented from diagnosis to brachytherapy completion. The impact of social determinants of health on waiting times was analyzed. Responses were assessed 6 months after treatment completion.RESULTSPatients spent a median delay time of 41 days and a median waiting time of 88 days. The median external beam radiation therapy duration was 40 days for CFRT, compared with 24 days for HFRT. The median waiting time before initiating brachytherapy was 40 days, leading to an overall treatment duration of 85 days for CFRT and 66 days for HFRT. Only 18% of patients on CFRT and 37% of patients on HFRT completed within timelines. The proportions of patients with either waiting times or treatment duration of ≤8 weeks who had complete responses were comparatively greater than those who started treatments after >8 weeks.CONCLUSIONOnly 25% completed treatment within the recommended timelines. The long waiting time for brachytherapy makes it impossible to finish within timelines. Strategies to expedite access to brachytherapy are necessary to enhance radiotherapy quality.
Objective Treatment of cervical cancer patients in Uganda is hampered by late diagnosis due to the unavailability of timely screening and limited availability of advanced cancer care. This study evaluated the clinical presentation and management of cervical cancer patients presenting at the Uganda Cancer Institute (UCI) in Kampala, the tertiary oncology facility in Uganda with access to radiotherapy and reflected on daily clinical practice to identify priority areas for improving cervical cancer care in Uganda. Patients and methods We retrospectively analyzed medical records of all cervical cancer patients presenting to UCI between January 2017 and March 2018 for sociodemographic characteristics and clinical variables with descriptive statistics. The clinical management of patients with early and advanced stage disease who initiated treatment at UCI was evaluated using the national targets formulated in the Uganda strategic plan for cervical cancer prevention and control. Results Medical records of 583 patients were included, representing less than 10% of the annual estimated incidence in Uganda. The majority (86%) of patients presented with advanced stage of disease. More than half of patients never initiated (31%) or interrupted (30%) treatment. The national treatment targets for surgery (10%) and palliative care (25%) were achieved for eligible patients at UCI, however, the target for chemoradiotherapy (65%) was not met. Conclusion Daily clinical practice differed from the ambitions formulated in the national treatment targets on cervical cancer control. While most women presented in advanced stage requiring chemoradiotherapy, the target was not met due to limited availability of radiotherapy. Although targets for surgery and palliative care were achieved at UCI facility level, they mask the unmet need of the majority of cervical cancer patients who never initiated or completed treatment. This demands for further expansion of oncological surgical capacity, chemotherapy and radiotherapy and warrants to focus on accessible prevention programs.
Background:The experiences of adult cancer patients in low-income countries regarding health care and infrastructure are largely undocumented. This study aimed to describe the experiences of adult men and women receiving treatment at a specialized cancer facility in Uganda.Method:Thirty-two adult patients with cancer (>= 18 years) with varying cancer diagnoses participated in 5 focus group discussions and a key informant interview at Uganda's specialized oncology facility. The interactions were audio-recorded, transcribed verbatim, and analyzed using thematic analysis.Results:The participants had both advanced and early stage cancers of varying ages (19-79 years). Four themes emerged: the Organization of care, Personal challenges, Mental suffering, and Satisfaction with care. The Organization of Care theme included categories describing rough sleep, poor food supply, inadequate facilities, and drug shortages. Personal challenges include high treatment costs and delays in accessing care. Mental suffering comprises of 4 categories: stigma, isolation, abandonment, and emotional distress. Satisfaction with care included improve health outcomes and professionalism.Conclusion:Participants predominantly reported negative experiences, whereas those with early stage disease primarily emphasized positive experiences. It is imperative for nurses to heighten their awareness of cancer and its treatment, cultivate empathy, and engage positively with both patients and their families. Further research on healthcare professionals' experiences regarding cancer care is needed to gain a comprehensive understanding of cancer care in Uganda.
Uganda has one of the highest incidence rates of cervical cancer in the world. Although this impacts all women, women living with human immunodeficiency virus (HIV) experience an increased risk for developing cervical cancer. This study aims to compare how HIV-positive and HIV-negative women in a remote sub-county in Uganda access health services to inform consideration of potential HIV and HPV-based cervical cancer screening integration at the community level. Women were recruited for this cross-sectional study door-to-door by village health teams if they had no prior screening or treatment of cervical cancer, no previous hysterectomy, were 30-49 years old residents of the South Busoga District Reserve, and could provide verbal informed consent. Participants completed a baseline survey, which included questions on HIV status, demographics, prior health history, past healthcare access and services recieved. The data was analyzed using bivariate descriptive statistics. Among the 1437 participants included in the analysis, 8.8% were HIV-positive. The majority of the respondents were between 30-34 years of age, were married, had received primary education or higher, and were farmers. The majority of women in both groups had accessed outreach visits (HIV-positive = 89.0%, HIV-negative = 85.8%) and health centres (HIV-positive = 96.1%, HIV-negative = 80.2%). The most commonly received services among both groups of women at outreach visits and health centres were immunization and antenatal care, respectively. Our study demonstrated that there were no significant differences in healthcare access between HIV-positive and HIV-negative women in rural Uganda. Additionally, the high usage of healthcare services by women living with HIV suggests that the integration of cervical cancer and HIV screening may facilitate early detection and prevention of cervical cancer among this population. This can reduce the burden of disease in Uganda and further contribute to the World Health Organization's initiative to eradicate cervical cancer.
Human papillomavirus (HPV) integration has been implicated in transforming HPV infection into cancer. To resolve genome dysregulation associated with HPV integration, we performed Oxford Nanopore Technologies long-read sequencing on 72 cervical cancer genomes from a Ugandan data set that was previously characterized using short-read sequencing. We find recurrent structural rearrangement patterns at HPV integration events, which we categorize as del(etion)-like, dup(lication)-like, translocation, multi-breakpoint, or repeat region integrations. Integrations involving amplified HPV-human concatemers, particularly multi-breakpoint events, frequently harbor heterogeneous forms and copy numbers of the viral genome. Transcriptionally active integrants are characterized by unmethylated regions in both the viral and human genomes downstream from the viral transcription start site, resulting in HPV-human fusion transcripts. In contrast, integrants without evidence of expression lack consistent methylation patterns. Furthermore, whereas transcriptional dysregulation is limited to genes within 200 kb of an HPV integrant, dysregulation of the human epigenome in the form of allelic differentially methylated regions affects megabase expanses of the genome, irrespective of the integrant's transcriptional status. By elucidating the structural, epigenetic, and allele-specific impacts of HPV integration, we provide insight into the role of integrated HPV in cervical cancer.