Browsing by Author "Namukwaya, Elizabeth"

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    A 10-year retrospective study of lung cancer in Uganda
    (BioMed Central Ltd, 2022-02) Bogere, Naghib; Bongomin, Felix; Katende, Andrew; Omaido, Blair Andrew; Namukwaya, Elizabeth; Mayanja-Kizza, Harriet; Walusansa, Victoria
    Abstract Background Lung cancer is a leading cause of cancer-related deaths in Uganda. In this study, we aimed to describe the baseline characteristics and survival of patients with lung cancer at the Uganda Cancer Institute (UCI). Methods We retrospectively reviewed medical records of all patients with a histological diagnosis of lung cancer registered at UCI between January 2008 and August 2018. Data on demographic, clinical, and treatment characteristics, and vital status were abstracted and analyzed. Patients with undocumented vital status on the medical records were contacted through phone calls. We determined survival as time from histological diagnosis to death. The Kaplan-Meier survival analysis was performed to estimate the median survival time and the 5-year overall survival rate. Results Of the 207 patients enrolled, 56.5% (n = 117) were female, median age was 60 years (range: 20–94), 78.7% (n = 163) were never-smokers and 18 (8.7%) were living with HIV. Presumptive anti-tuberculosis treatment was given to 23.2% (n = 48). Majority had non-small cell lung cancer (96.6%, n = 200) with 74.5% (n = 149) adenocarcinoma and 19% (n = 38) squamous cell carcinoma. All had advanced (stage III or IV) disease with 96.1% (n = 199) in stage IV. Chemotherapy (44.9%, n = 93) and biological therapy (34.8%, n = 72) were the commonest treatments used. Overall survival at 6 months, 1-, 2- and 5-years was 41.7, 29.7, 11.8, and 1.7%, respectively. The median survival time of 4.4 months was not statistically significantly different between participants with NSCLC or SCLC (4.5 versus 3.9 months, p = .335). Conclusion In Uganda, adenocarcinoma is the predominant histologic subtype of lung cancer and patients are predominantly females, and non-smokers. Patients present late with advanced disease and poor overall survival. Public awareness should be heightened to facilitate early detection and improve outcomes.
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    EOLinPLACE: an international research project to reform the way dying places are classified and understood
    (SAGE Publications, 2024-02) Namukwaya, Elizabeth; de Sousa, Andrea Bruno; Lopes, Sílvia; Touwen, Dorothea Petra; van der Steen, Jenny Theodora; Bélanger, Emmanuelle; Brooks, Joanna; Yghemonos, Stecy; Sehmi, Kawaldip; Gomes, Barbara
    Background: Whenever possible, a person should die where they feel it is the right place to be. There is substantial global variation in home death percentages but it is unclear whether these differences reflect preferences, and there are major limitations in how the place of death is classified and compared across countries. Objectives: EOLinPLACE is an international interdisciplinary research project funded by the European Research Council aiming to create a solid base for a ground-breaking international classification tool that will enable the mapping of preferred and actual places towards death. Design: Mixed-methods observational research. Methods and analysis: We combine classic methods of developing health classifications with a bottom-up participatory research approach, working with international organizations representing patients and informal carers [International Alliance of Patients’ Organizations (IAPO) and Eurocarers]. First, we will conduct an international comparative analysis of existing classification systems and routinely collected death certificate data on place of death. Secondly, we will conduct a mixed-methods study (ethnography followed by longitudinal quantitative study) in four countries (the Netherlands, Portugal, Uganda and the United States), to compare the preferences and experiences of patients with life-threatening conditions and their families. Thirdly, based on the generated evidence, we will build a contemporary classification of dying places; assess its content validity through focus groups with patients, carers and other stakeholders; and evaluate it in a psychometric study to examine construct validity, reliability, responsiveness, data quality and interpretability. Ethics: Approved by the ethics committee of the University of Coimbra, Faculty of Medicine (CE-068-2022) and committees in each of the participating countries. Discussion: The findings will provide a deeper understanding of the diversity in individual end-of-life pathways. They will enable key developments such as measurement of progress towards achievement of preferences when care can be planned. The project will open new directions in how to care for the dying. Trial registration: Research Registry UIN 9213.
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    Palliative Care Research in Africa: Consensus Building for a Prioritized Agenda
    (Journal of pain and symptom management, 2014) Powell, Richard A.; Harding, Richard; Namisango, Eve; Katabira, Elly; Ajayi, Ike O.; Kasirye, Ivy; Namukwaya, Elizabeth; Atieno, Mackuline; Mwangi-Powell, Faith N.
    Palliative care research in Africa is in its relative infancy, with dedicated financial support extremely limited. Therefore, setting research priorities to optimize use of limited resources is imperative.To develop a prioritized research agenda for palliative care in Africa.We used a two-stage process involving palliative care professionals and researchers: 1) generation of an initial topic list at a consultative workshop of experts and 2) prioritization of that list using a consensus development process, the nominal group technique.Phase 1: 41 topics were generated across five groups, with several topics nominated in more than one group. Phase 2: 16 topics and three broad thematic areas were identified. The two most prioritized topics within each of the three themes were the following: Theme 1: patient, family, and volunteers—1) care outcomes and the impact of palliative care as perceived by patients and caregivers and 2) palliative care needs of children; Theme 2: health providers—1) impact of palliative care training on care and practice and 2) integration of palliative care and antiretroviral therapy services; and Theme 3: health systems—1) palliative care needs assessments at the micro-, meso-, and macro-levels and 2) integration of palliative care into health systems and educational curricula.Consensus-based palliative care topics determined by the study can assist researchers in optimizing limited research capacities by focusing on these prioritized areas. Subsequent to the identification and publication of the research agenda, concrete steps will be undertaken by the African Palliative Care Research Network and other partners to help implement it.
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    The Role, Impact, and Support of Informal Caregivers in the Delivery of Palliative Care for Patients with Advanced Cancer: A Multi-Country Qualitative Study
    (Palliative medicine, 2021) Adejoh, Samuel Ojima; Boele, Florien; Akeju, David; Dandadzi, Adlight; Nabirye, Elizabeth; Namisango, Eve; Namukwaya, Elizabeth; Ebenso, Bassey; Nkhoma, Kennedy; Allsop, Matthew J.
    Cancer is increasing in its prevalence in sub-Saharan Africa. Informal caregivers are key to supporting engagement and interaction with palliative care services, but limited literature on their role impedes development of supportive interventions.We aimed to understand the role, impact, and support of informal caregivers of patients with advanced cancer when interacting with palliative care services in Nigeria, Uganda, and Zimbabwe.Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used.Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries.A total of 48 transcripts were analyzed. Mean age was 37 (range 19–75) with equal numbers of men and women. Five themes emerged from the data: (1) caregivers are coordinators of emotional, practical, and health service matters; (2) caregiving comes at a personal social and financial cost; (3) practical and emotional support received and required; (4) experience of interacting and liaising with palliative care services; and (5) barriers and recommendations relating to the involvement of palliative care.The role of informal caregivers is multi-faceted, with participants reporting taking care of the majority of medical, physical, financial, and emotional needs of the care recipient, often in the face of sacrifices relating to employment, finances, and their own health and social life. Efforts to develop comprehensive cancer control plans in sub-Saharan Africa must take account of the increasing evidence of informal caregiver needs.
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    Stakeholder Perspectives and Requirements to Guide the Development of Digital Technology for Palliative Cancer Services: A Multi-Country, Cross-Sectional, Qualitative Study in Nigeria, Uganda and Zimbabwe
    (BMC palliative care, 2021) Nkhoma, Kennedy Bashan; Ebenso, Bassey; Akeju, David; Nabirye, Elizabeth; Namukwaya, Elizabeth; Namisango, Eve
    Coverage of palliative care in low and middle-income countries is very limited, and global projections suggest large increases in need. Novel approaches are needed to achieve the palliative care goals of Universal Health Coverage. This study aimed to identify stakeholders’ data and information needs and the role of digital technologies to improve access to and delivery of palliative care for people with advanced cancer in Nigeria, Uganda and Zimbabwe.We conducted a multi-country cross-sectional qualitative study in sub-Saharan Africa. In-depth qualitative stakeholder interviews were conducted with N = 195 participants across Nigeria, Uganda and Zimbabwe (advanced cancer patients n = 62, informal caregivers n = 48, health care professionals n = 59, policymakers n = 26). Verbatim transcripts were subjected to deductive and inductive framework analysis to identify stakeholders needs and their preferences for digital technology in supporting the capture, transfer and use of patient-level data to improve delivery of palliative care.Our coding framework identified four main themes: i) acceptability of digital technology; ii) current context of technology use; iii) current vision for digital technology to support health and palliative care, and; iv) digital technologies for the generation, reporting and receipt of data. Digital heath is an acceptable approach, stakeholders support the use of secure data systems, and patients welcome improved communication with providers. There are varying preferences for how and when digital technologies should be utilised as part of palliative cancer care provision, including for increasing timely patient access to trained palliative care providers and the triaging of contact from patients.We identified design and practical challenges to optimise potential for success in developing digital health approaches to improve access to and enhance the delivery of palliative cancer care in Nigeria, Uganda and Zimbabwe. Synthesis of findings identified 15 requirements to guide the development of digital health approaches that can support the attainment of global health palliative care policy goals.
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    United against cancer: prevention to end-of-life care—highlights from the Uganda Cancer Institute–Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24–25 August 2017, Kampala, Uganda
    (Ecancermedicalscience, 2017) Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson
    The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference oncancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patientcare improved across Uganda and the region. The theme – United Against Cancer: Prevention to End-of-Life Care – reflected this jointvision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation andpalliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importanceof the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National CancerControl Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rightsand access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration;resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learningfrom each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognized, allowing for further networking between cancer and palliative care organizations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care