The rise of home death in the COVID-19 pandemic: a population-based study of death certificate data for adults from 32 countries, 2012-2021.

Background: During the coronavirus 2019 disease (COVID-19) pandemic, health systems had to respond to the needs of COVID-19 patients, while caring for patients with other life-threatening conditions. Pandemics, such as the COVID-19 pandemic, stir global health and mortality patterns. This is likely to include trends in dying places. In this paper, we examine trends in place of death for adults in 32 countries, comparing the initial COVID-19 pandemic years (2020-2021) with the eight years before the pandemic (2012-2019). Methods: Data on place of death for all adults (18 years and over) that died from 1 January 2012 to 31 December 2021 were requested (47 countries approached, 32 included). The classification of place of death varied widely between countries. "Home" was the most common category, the remaining category groups comprised "hospital or health institution", "other defined", and "ill-defined". We analysed place of death data in an aggregate form, by sex, age group, and selected underlying causes of death (cancer, dementia, and COVID-19). Findings: The study included 100.7 million people (51.5% male, 68.0% with ≥70 years), 20.4% died from cancer and 5.8% from dementia; 30.8% of deaths took place at home. The percentage of home deaths rose from 30.1% in 2012-2013 to 30.9% in 2018-2019 and further to 32.2% in the pandemic (2020-2021). Home deaths increased during the pandemic in 23 countries. In most countries the rise was greater in women and cancer; age differences were not consistent. Interpretation: Our study shows that there was a rise in home deaths during the pandemic, but with variability across countries, sex, age, and causes of death. The sex difference observed in most countries may have several explanations, including more engagement of women in discussions about end of life care planning and hospital admission avoidance. A higher rise of home deaths among people dying of cancer may be explained by the more predictable disease trajectory compared to non-malignant conditions, as well as earlier and better integrated palliative care. Funding: This work is part of the EOLinPLACE Project, which has received funding from the European Research Council (ERC) under the European Union's Horizon 2020 research and innovation programme (grant agreement No 948609).

EOLinPLACE: an international research project to reform the way dying places are classified and understood.

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.

The caring experiences of family caregivers for patients with advanced cancer in Uganda: A qualitative study.

BACKGROUND: Cancer morbidity and mortality is rising in sub-Saharan Africa. Given this rise, family caregivers play an integral role in provision of quality cancer care services. This study explored the family caregivers (FCGs)/relatives' experiences of caring for patients with advanced cancer (stage 3 or stage 4) in Uganda. METHODS: This was a descriptive qualitative study exploring the lived experiences of FCGs of patients with advanced cancer attending care at the Uganda cancer institute. We purposively recruited twelve FCGs and conducted face-to-face in-depth interviews using an interviewer-guided semi-structured questionnaire. Data were analyzed by thematic analysis. RESULTS: The age range of participants was 19 to 49 years. Most participants were children of the patients (n = 7), had attained tertiary education (n = 7), and had taken care of their loved ones for at least one year (n = 10). Six themes emerged from data analysis; (i) caring roles, (ii) caring burdens, (iii) role conflict, (iv) health system tensions, (v) support and motivation, (vi) caring benefits, lessons and recommendations. CONCLUSION: Study findings highlight the fundamental role of FCGs in the care of their loved ones, and illuminate the neglected physical, psychological and social challenges of family caregivers amidst health system tensions and conflicting roles. The needs of family caregivers should be embedded within cancer care, prevention and control programs particularly in low resource settings.

Virologic Nonsuppression Among Patients With HIV Newly Diagnosed With Cancer at Uganda Cancer Institute: A Cross-Sectional Study.

PURPOSE: AIDS-related mortality declined markedly since the introduction of antiretroviral therapy (ART); however, cancer mortality in Africa was higher than its incidence in 2020. People living with HIV (PLWHIV) are at an increased risk of malignancy and death from malignancy compared with the general population. In Uganda, AIDS-defining malignancies (ADMs), including cervical cancer, Kaposi sarcoma, and non-Hodgkin lymphoma, are among the commonest malignancies. Virologic nonsuppression has been identified as an important predictor of mortality among PLWHIV diagnosed with cancer. This study aimed to determine the prevalence and to identify factors associated with virologic nonsuppression among PLWHIV newly diagnosed with cancer. METHODS: This was a cross-sectional study that was carried out between December 2018 and April 2019 at the Uganda Cancer Institute. PLWHIV who had been on ART for at least 6 months and were newly diagnosed with cancer were enrolled. RESULTS: A total of 167 participants were enrolled. Cervical cancer was the commonest ADM (n = 45; 50.6%) of all ADMs, while esophageal and breast cancers were the commonest non-ADMs, accounting for 17.5% (n = 14) each of all non-ADMs. The prevalence of virologic nonsuppression was 15%. Having Kaposi sarcoma (odds ratio [OR], 8.15; P = .003), being poorly adherent to ART (OR, 4.1; P = .045), and being on second-line ART (OR, 5.68; P = .011) were associated with virologic nonsuppression. CONCLUSION: The prevalence of virologic nonsuppression is high among patients with HIV newly diagnosed with cancer. These findings emphasize the need for strengthening of adherence strategies, optimizing ART regimens, and prioritization of viral load testing among PLWHIV with newly diagnosed malignancy.

Exploring the experiences of healthcare professionals in South Africa and Uganda around communicating with children about life-threatening conditions: a workshop-based qualitative study to inform the adaptation of communication frameworks for use in these settings.

OBJECTIVES: This study aimed to explore how published communication frameworks could be amended to ensure applicability and cultural appropriateness for professionals to support family-centred conversations by investigating' healthcare professionals' (1) experiences of providing support to families when a caregiver or a dependent child (<18 years old) has a life-threatening condition, (2) perceived challenges for caregivers and healthcare professionals in communicating with children about illness, (3) perceptions of how clinicians could be equipped to facilitate conversations between caregivers and children about an adult or the child's own life-threatening condition and (4) suggestions for amendments to previously published guidelines to ensure cultural relevance in South Africa and Uganda. DESIGN: A qualitative study involving two 2-day workshops with embedded focus group discussions, break out rooms and consensus discussions. SETTING: Health and social care and third sector organisations in South Africa and Uganda. PARTICIPANTS: Thirty-two professionals providing care to families affected by life-threatening conditions in South Africa or Uganda who were aged 18 years or older and able to converse in English. RESULTS: Participants identified obstacles to having conversations with caregivers about children and to telling children about serious illness during consultations. These included patients' beliefs about illness, medicine and death, language barriers between families and the healthcare team, and emotional and practical challenges for professionals in having these conversations. Culturally appropriate adaptations were made to previously published communication frameworks for professionals to support family-centred conversations. CONCLUSIONS: Culturally sensitive communication frameworks could help healthcare professionals to talk with families about what children need to know when they or a caregiver have a serious illness. More broadly, effective communication could be facilitated by promoting healthcare professionals' and communities' understanding of the benefits of telling children about illness within the family. Together these strategies may mitigate the psychological impact of global disease on children and their families.

Psychosocial and emotional morbidities after a diagnosis of cancer: Qualitative evidence from healthcare professional cancer patients.

AIM: This inquiry aimed to; (1) examine the psychosocial and emotional sequelae associated with cancer patient-hood experience in healthcare professionals (HCPs) in Uganda, (2) generate evidence to inform clinical and nursing practice about the needs of HCP patients with cancer. DESIGN: This was a qualitative phenomenological study. METHODS: The study was conducted among HCP cancer patients and survivors recruited from oncology and palliative care settings in Uganda. Data were collected via audio-taped, face-to-face or telephone open-ended interviews. Interviews were transcribed verbatim. Thematic analysis was used. RESULTS: Eight HCP cancer patients and survivors participated in the study. Their mean age was 56 years, range 29-85 years. Three major themes emerged: (1) From a healthcare provider to a patient, (2) Socioeconomic challenges, and (3) Coping and support strategies.

The use of and need for data and information by health professionals supporting the delivery of palliative cancer care services in sub-Saharan Africa: A qualitative study.

PURPOSE: The ability to develop and evaluate approaches to the management of advanced cancer in sub-Saharan Africa is limited by the lack of local, reliable and valid data to ensure that practice is evidence-based, replicable and reflects the needs of the population served. METHODS: A secondary qualitative analysis of in-depth interviews with 59 health professionals delivering palliative cancer care in Nigeria, Uganda and Zimbabwe were conducted to determine the use and needs for data and information for patient care and service delivery. Framework analysis was used, informed by a conceptual model for data use in low and middle-income countries. RESULTS: Three meta-themes include: (1) Current practice in data gathering and use; (2) Gaps for capturing, storing information and supporting communication, and; (3) Needs and opportunities for data use. Deficits in current data access and use were identified, alongside targets for improving the quality, accessibility and utility of data to inform the development of palliative cancer care. CONCLUSIONS: The availability and use of relevant and reliable data relating to the current provision of palliative cancer care are requisite for the contextually appropriate and effective development of health services. The requirements and constraints articulated by participants can guide future development and optimisation of digital health approaches for palliative cancer care in the participating countries, with relevance to the wider sub-Saharan Africa region.

"From the Time You Start With them Until the Lord Calls You": A Qualitative Study on the Experiences and Expectations of People Living with Advanced Cancer Interacting With Palliative Care Services in Uganda, Nigeria and Zimbabwe.

CONTEXT: A challenge facing the provision of palliative care in sub-Saharan Africa is a means of increasing coverage of services whilst maintaining quality. Developing an evidence base that reflects patients' experiences and expectations of palliative care services, the context within which services are provided, and the approaches adopted by services in caring for patients, could facilitate and inform the planning and development of patient-centered and responsive services. OBJECTIVES: To explore the experiences and expectations of palliative care for people living with advanced cancer in Nigeria, Uganda, and Zimbabwe. METHODS: A secondary qualitative analysis of in-depth interviews with 62 people with advanced cancer in Nigeria, Uganda, and Zimbabwe. Framework approach to thematic analysis of transcripts was adopted, focusing on patients' experiences and expectations when interacting with palliative care services, aligning reporting with the COnsolidated criteria for REporting Qualitative research (COREQ). RESULTS: Four main themes were generated from the analysis: 1) Condition and community as drivers of a multidimensional burden when living with advanced cancer; 2) The expectations and endeavors of palliative care to ameliorate the impact of cancer on physical, psychological and basic needs; 3) Processes and preferences for interacting and communicating with palliative care services, and; 4) Restoration of hope in the context of limited resources. CONCLUSION: Wide-ranging physical, psychological, social and financial impacts on participants were outlined. These concerns were largely met with compassionate and responsive care in the context of constrained resources. Study findings can inform evolving notions of patient-centred care for serious illnesses in the participating countries.

Patient experiences of living with cancer before interaction with palliative care services in Zimbabwe: A qualitative secondary data analysis.

OBJECTIVE: Cancer patients in Zimbabwe typically access health services with advanced disease, limiting treatment choices and lessening the likelihood of positive treatment outcomes. We outline experiences of patients with advanced cancer prior to interaction with palliative care services to identify targets for future intervention development to enhance care delivery in Zimbabwe. METHODS: Participants were purposively sampled adult patients with advanced cancer. We adopted a thematic approach to guide a qualitative secondary data analysis exploring factors influencing support sought by participants, external factors influencing decision making across the disease trajectory and the process for seeking and accessing palliative care. RESULTS: Participants reported fragmented and uncoordinated care, from initial symptom experience and throughout disease progression. A recurring notion of disjuncture was present through participants' experiences of gaps, breaks and discontinuity across the disease trajectory. Each step had a beginning and end without clear routes for transition with movement between steps as a result of happenstance or informal encounters. CONCLUSION: Targets for intervention development at the patient and family level exist that may reduce the disjuncture currently experienced between need and care provision. A holistic response that incorporates engagement with policy actors is critical to addressing prominent financial constraints for patients.

'I got to understand what it means to be a cancer patient': Qualitative evidence from health professional cancer patients and survivors.

Objective: The study sought to (1) examine healthcare professionals' (HCPs) lived experiences of cancer and (2) generate evidence to inform policy and clinical practice for cancer care. Methods: This was a qualitative study conducted between January and December 2020 on HCPs who were ill with, or who had survived cancer in Uganda. Purposive sampling was used. A demographic form and an open-ended topic guide were used to collect data. Face-to-face and telephone interviews were conducted in English; audio-recorded data was collected until saturation was reached. Colaizzi's framework of thematic analysis was used. Results: Eight HCP cancer patients and survivors from medical, allied health, and nursing backgrounds participated in the study. Their mean age was 56 years (29-85). Five were female. Four broad themes emerged from the interviews: (1) experience of pre-diagnosis and receiving bad news, (2) impact on self and role identity, (3) healthcare system and treatment experiences, and (4) the gaps and what should be done. Conclusion: Cancer patient-hood introduces vulnerability and remarkable disruptions and suffering in nearly all domains of quality-of-life, that is, in professional identity and work, social, emotional, physical, and economic facets of life. Participants identified how they experienced a healthcare system which was costly and staffed by unmotivated staff with limited access to resources, which resulted in many unmet needs and an overall poor experience. Participants identified how, in their view, the healthcare system in Uganda needed to be better resourced, protected by policy and legislation and how cancer awareness among the population needed to be improved.

A 10-year retrospective study of lung cancer in Uganda.

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.

Comparison of the health-related quality of life of end stage kidney disease patients on hemodialysis and non-hemodialysis management in Uganda.

BACKGROUND: Health-related quality of life is recognized as a key outcome in chronic disease management, including kidney disease. With no national healthcare coverage for hemodialysis, Ugandan patients struggle to pay for their care, driving families and communities into poverty. Studies in developed countries show that patients on hemodialysis may prioritize quality of life over survival time, but there is a dearth of information on this in developing countries. We therefore measured the quality of life (QOL) and associated factors in end stage renal disease (ESRD) patients in a major tertiary care hospital in Uganda. METHODS: Baseline QOL measurement in a longitudinal cohort study was undertaken using the Kidney Disease Quality of Life Short Form Ver 1.3. Patients were recruited from the adult nephrology unit if aged > 18 years with an estimated glomerular filtration rate ≤ 15mls/min/1,73m2. Clinical, demographic and micro-financial information was collected to determine factors associated with QOL scores. RESULTS: Three hundred sixty-four patients (364) were recruited, of whom 124 were on hemodialysis (HD) and 240 on non-hemodialysis (non-HD) management. Overall, 94.3% of participants scored less than 50 (maximum 100). Mean QOL scores were low across all three principal domains: physical health (HD: 33.14, non-HD: 34.23), mental health (HD: 38.01, non-HD: 38.02), and kidney disease (HD: 35.16, non-HD: 34.00). No statistically significant difference was found between the overall quality of life scores of the two management groups. Breadwinner status (p < 0.001), source of income (p0.026) and hemodialysis management type (p0.032) were the only factors significantly associated with QOL scores, and this was observed in the physical health and kidney disease principal domains only. No factors were significantly associated with scores for the mental health principal domain and/or overall QOL score. CONCLUSION: The quality of life of Ugandan patients with ESRD has been found to be lower across all three domains of the Kidney Disease Quality of Life Short Form than reported anywhere in the world, with no difference observed between the non-HD and HD management groups. Interventions targeting all domains of QOL are needed among patients with ESRD in Uganda and, potentially, in other resource limited settings.

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.

INTRODUCTION: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

The role, impact, and support of informal caregivers in the delivery of palliative care for patients with advanced cancer: A multi-country qualitative study.

BACKGROUND: 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. AIM: 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. DESIGN: Secondary analysis of qualitative interview transcripts. The dataset was assessed for fit and relevance and framework approach was used. SETTING/PARTICIPANTS: Interview transcripts of informal caregivers included participants aged over 18 years of age recruited from palliative care services across participating countries. RESULTS: 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. CONCLUSIONS: 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.

Global Palliative Care Education in the Time of COVID-19.

The coronavirus disease 2019 (COVID-19) pandemic has highlighted the need for health care providers skilled in rapid and flexible decision making, effective and anticipatory leadership, and in dealing with trauma and moral distress. Palliative care (PC) workers have been an essential part of the COVID-19 response in advising on goals of care, symptom management and difficult decision making, and in supporting distressed health care workers, patients, and families. We describe Global Palliative Education Collaborative (GPEC), a training partnership between Harvard, University of California San Francisco, and Tulane medical schools in the U.S.; and two international PC programs in Uganda and India. GPEC offers U.S.-based PC fellows participation in an international elective to learn about resource-limited PC provision, gain perspective on global challenges to caring for patients at the end of life, and cultivate resiliency. International PC colleagues have much to teach about practicing compassionate PC amidst resource constraints and humanitarian crisis. We also describe a novel educational project that our GPEC faculty and fellows are participating in-the Resilience Inspiration Storytelling Empathy Project-and discuss positive outcomes of the project.

Understanding data and information needs for palliative cancer care to inform digital health intervention development in Nigeria, Uganda and Zimbabwe: protocol for a multicountry qualitative study.

INTRODUCTION: Palliative care is a clinically and cost-effective component of cancer services in sub-Saharan Africa (SSA). Despite the significant need for palliative cancer care in SSA, coverage remains inadequate. The exploration of digital health approaches could support increases in the quality and reach of palliative cancer care services in SSA. However, there is currently a lack of any theoretical underpinning or data to understand stakeholder drivers for digital health components in this context. This project addresses this gap through engaging with key stakeholders to determine data and information needs that could be supported through digital health interventions. METHODS AND ANALYSIS: This is a multicountry, cross-sectional, qualitative study conducted in Nigeria, Uganda and Zimbabwe. In-depth interviews will be conducted in patients with advanced cancer (n=20), caregivers (n=15), health professionals (n=20) and policy-makers (n=10) in each of the three participating countries. Data from a total of 195 interviews will transcribed verbatim and translated into English before being imported into NVivo software for deductive framework analysis. The analysis will seek to understand the acceptability and define mechanisms of patient-level data capture and usage via digital technologies. ETHICS AND DISSEMINATION: Ethics approvals have been obtained from the Institutional Review Boards of University of Leeds (Ref: MREC 18-032), Research Council of Zimbabwe (Ref: 03507), Medical Research Council of Zimbabwe (Ref: MRCZ/A/2421), Uganda Cancer Institute (Ref: 19-2018), Uganda National Council of Science and Technology (Ref: HS325ES) and College of Medicine University of Lagos (Ref: HREC/15/04/2015). The project seeks to determine optimal mechanisms for the design and development of subsequent digital health interventions to support development, access to, and delivery of palliative cancer care in SSA. Dissemination of these findings will occur through newsletters and press releases, conference presentations, peer-reviewed journals and social media. TRIAL REGISTRATION NUMBER: ISRCTN15727711.

End-of-Life Palliative Care Practices and Referrals in Uganda.

BACKGROUND: While early involvement and integration of palliative care with oncology can positively impact quality of life and survival of patients with advanced cancer, there is a dearth of information regarding this integration in sub-Saharan Africa. OBJECTIVE: We sought to describe the rate and factors predicting specialist palliative referrals among cancer patients in Uganda. DESIGN: We examined the rate of referrals of cancer patients to palliative specialists via a chart review, while also surveying and interviewing doctors at the Uganda Cancer Institute (UCI) about their approaches to palliative care. SETTING: All adult patients at the UCI who died in a 20-month interval from 2014 to 2015. All UCI doctors were approached for the survey and 25 (96%) participated. Seven of these doctors were also individually interviewed. MEASUREMENTS: Number of referrals to palliative specialists and qualitative responses to questions about end-of-life care management. RESULTS: Sixty-six (11.1%) of 595 patients were referred to palliative care specialists. Patients with worse ECOG performance statuses were more likely to be referred to palliative specialists (odds ratio 2.23, p = 0.03); no other factors were predictive of a referral. Median number of days lived after referral was 5 days (interquartile range 2-13). Doctors explained the low referral rate and short life expectancy after referral by limited palliative resources and a reticence to have end-of-life management conversations with patients due to cultural taboos. CONCLUSION: Despite recognized benefits of palliative collaboration, doctors at the UCI seldom refer patients to palliative care specialists due to limited staffing, cultural barriers, and difficult interservice communication.

Chemotherapy Use at the End of Life in Uganda.

Purpose Avoiding chemotherapy during the last 30 days of life has become a goal of cancer care in the United States and Europe, yet end-of-life chemotherapy administration remains a common practice worldwide. The purpose of this study was to determine the frequency of and factors predicting end-of-life chemotherapy administration in Uganda. Methods Retrospective chart review and surveys and interviews of providers were performed at the Uganda Cancer Institute (UCI), the only comprehensive cancer center in the area, which serves a catchment area of greater than 100 million people. All adult patients at the UCI with reported cancer deaths between January 1, 2014, and August 31, 2015 were included. All UCI physicians were offered a survey, and a subset of physicians were also individually interviewed. Results Three hundred ninety-two patients (65.9%) received chemotherapy. Age less than 55 years (odds ratio [OR], 2.30; P = .004), a cancer diagnosis greater than 60 days before death (OR, 9.13; P < .001), and a presenting Eastern Cooperative Oncology Group performance status of 0 to 2 (OR, 2.47; P = .001) were associated with the administration of chemotherapy. More than 45% of patients received chemotherapy in the last 30 days of life. No clinical factors were predictive of chemotherapy use in the last 30 days of life, although doctors reported using performance status, cancer stage, and tumor chemotherapy sensitivity to determine when to administer chemotherapy. Patient expectations and a lack of outcomes data were important nonclinical factors influencing chemotherapy administration. Conclusion Chemotherapy is administered to a high proportion of patients with terminal cancer in Uganda, raising concern about efficacy. Late presentation of cancer in Uganda complicates end-of-life chemotherapy recommendations, necessitating guidelines specific to sub-Saharan Africa.

'I think my body has become addicted to those tablets'. Chronic heart failure patients' understanding of and beliefs about their illness and its treatment: A qualitative longitudinal study from Uganda.

BACKGROUND: Patients with heart failure in Uganda present for health care with advanced structural heart disease, have repeated hospitalizations and poorly controlled disease symptoms. The reasons for these are unclear. Literature from other settings shows that patients' understanding of their illness and their beliefs influence their health related behaviour. The study aimed to explore the beliefs of patients with heart failure, their understanding of their illness and its treatment, and how this influenced their health related behaviour to inform future health education programs, information and palliative care services. METHODS: Serial qualitative in-depth interviews were conducted with Heart Failure patients who were purposively sampled and recruited in Mulago National Referral Hospital until thematic saturation was reached. In-depth interviews were conducted at three time points over the course of their illness with intervals of 3 months between interviews. A grounded theory approach was used in data analysis. The University of Edinburgh ethics committee, Mulago Hospital Research Ethics committee and the Uganda National Council of Science and Technology (Reference numbers D/GC/178; MREC 33, SS 3083 respectively) approved the research. RESULTS: A total of 40 face to face qualitative longitudinal interviews (36-patient alone, 4 paired-patient and family carer), were conducted with 21 patients. The findings revealed that heart failure patients were unaware of the symptoms of the illness and their definition of illness differed from that of health professionals. Patients understood their diagnosis, cause of illness, prognosis and the importance of the medicines differently from health professionals, and had insufficient information on self-care. Lay beliefs were used to explain many aspects of the illness and treatments. All these influenced where patients sought care and their adherence to treatment, self-care and follow up leading to uncontrolled disease. CONCLUSION: There is a high level of health illiteracy among heart failure patients in Uganda. Patients rely on lay beliefs to make health decisions and medical information is often miscomprehended. There is an urgent need for health education using culturally appropriate information.

Improving care for people with heart failure in Uganda: serial in-depth interviews with patients' and their health care professionals.

BACKGROUND: The short prognosis of patients with advanced heart failure (HF) and the associated multidimensional distress as illustrated in literature from high income countries necessitates the integration of palliative care into the care of advanced HF patients to address these needs and improve their quality of life. These needs, which are subjective, have not been described from the patients' and health care professionals'(HPs) view point in the Ugandan setting, a low income country with a different socio-cultural context. This study aimed at bridging this gap in knowledge by eliciting patients' and HPs' views of HF patients' needs over the course of their illness to enable generalists, cardiologists and palliative care clinicians to develop guidelines to provide patient-centred realistic care in Uganda. METHODS: Serial qualitative in-depth interviews were conducted with HF patients who were purposively sampled and recruited in Mulago National Referral Hospital (MNRH) until thematic saturation. In-depth interviews were conducted at three time points with intervals of 3 month between interviews over the course of their illness in the hospital and their home context. One-off interviews were conducted with HPs that manage HF in MNRH. We used a grounded theory approach in data analysis. The Uganda National Council of science and technology approved the research. RESULTS: Forty-eight interviews were conducted with 21 patients and their carers and eight interviews with their HPs. Multidimensional needs including physical, psychological, social, spiritual and information needs were identified. These highlighted the underpinning need to have normal functioning, control, to cope and adapt to a changed life and to find meaning. Spiritual needs were less recognised by HPs than the other multidimensional needs. Information needs were commonly unmet. Patients and HPs suggested improvements in care that were congruent with the recommendations in chronic disease care and the six pillars of the WHO health systems strengthening approach. CONCLUSION: Management of HF in Uganda requires an approach that targets multidimensional needs, embraces multidisciplinary care and strengthens health systems which are all important tenets of palliative care.