Browsing by Author "Namisango, Eve"

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    Africa Needs to Prioritize one Health Approaches that Focus on the Environment, Animal Health and Human Health
    (Nature Medicine, 2021) Otu, Akaninyene; Efa, Emmanuel; Meseko, Clement; Cadmus, Simeon; Athingo, Rauna; Namisango, Eve; Ogoina, Dimie; Okonofua, Friday; Ebenso, Bassey
    The past two decades have witnessed a global increase in the frequency of emerging and re-emerging infectious-disease epidemics. African countries have experienced the devastating impact of successive epidemics that are projected to have caused a loss of over 227 million years of healthy life and an annual productivity loss of over US$800 billion across the continent1. Between 2016 and 2018, over 260 infectious-disease epidemics, disasters and other potential public-health emergencies were identified in Africa, with 41 (79%) of the 52 countries in the region recording at least one epidemic during that period2. The five top causes of disease epidemics were cholera, measles, viral hemorrhagic diseases, malaria and meningitis.
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    An Analysis of Palliative Care Development in Africa: A Ranking based on Region-Specific Macro-Indicators
    (Journal of pain and symptom management, 2018) Rhee, John Y.; Garralda, Eduardo; Namisango, Eve; Luyirika, Emmanuel; Centeno, Carlos
    To date, there is no study comparing palliative care (PC) development among African countries.To analyze comparatively PC development in African countries based on region-specific indicators.Data were obtained from the African PC Association Atlas of PC in Africa, and a comparative analysis was conducted. Nineteen indicators were developed and defined through qualitative interviews with African PC experts and a two-round modified Delphi consensus process with international experts on global PC indicators. Indicators were grouped by the World Health Organization public health strategy for PC dimensions. These indicators were then sent as a survey to key informants in 52 of 54 African countries. Through an expert weighting process and ratings from the modified Delphi, weights were assigned to each indicator. Surveys were received from 89% (48 of 54) of African countries. The top three countries in overall PC development were, in order, Uganda, South Africa, and Kenya. Variability existed by dimension. The top three countries in specialized services were Uganda, South Africa, and Nigeria; in policies, it was Botswana followed by parity among Ethiopia, Rwanda, and Swaziland; in medicines, it was Swaziland, South Africa, then Malawi; and in education, it was equivalent between Uganda and Kenya, then Ghana and Zambia.Uganda, South Africa, and Kenya are the highest performing countries and were the only ones with composite scores greater than 0.5 (50%). However, not one country universally supersedes all others across all four PC dimensions. The breakdown of rankings by dimension highlights where even high-performing African countries can focus their efforts to further PC development.
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    Availability Of Essential Drugs for Managing HIV-Related Pain and Symptoms Within 120 PEPFAR-Funded Health Facilities in East Africa: A Cross-Sectional Survey With Onsite Verification
    (Palliative medicine, 2014) Harding, Richard; Simms, Victoria; Penfold, Suzanne; Mwangi-Powell, Faith; Namisango, Eve; Moreland, Scott; Atieno, Mackuline; Kataike, Jennifer; Nsubuga, Clare; Munene, Grace; Banga, Geoffrey; Higginson, Irene J.
    World Health Organization’s essential drugs list can control the highly prevalent HIV-related pain and symptoms. Availability of essential medicines directly influences clinicians’ ability to effectively manage distressing manifestations of HIV.To determine the availability of pain and symptom controlling drugs in East Africa within President’s Emergency Plan for AIDS Relief–funded HIV health care facilities.Directly observed quantitative health facilities’ pharmacy stock review. We measured availability, expiration and stock-outs of specified drugs required for routine HIV management, including the World Health Organization pain ladder.A stratified random sample in 120 President’s Emergency Plan for AIDS Relief–funded HIV care facilities (referral and district hospitals, health posts/centres and home-based care providers) in Kenya and Uganda.Non-opioid analgesics (73%) and co-trimoxazole (64%) were the most commonly available drugs and morphine (7%) the least. Drug availability was higher in hospitals and lower in health centres, health posts and home-based care facilities. Facilities generally did not use minimum stock levels, and stock-outs were frequently reported. The most common drugs had each been out of stock in the past 6 months in 47% of facilities stocking them. When a minimum stock level was defined, probability of a stock-out in the previous 6 months was 32.6%, compared to 45.5% when there was no defined minimum stock level (χ2 = 5.07, p = 0.024).The data demonstrate poor essential drug availability, particularly analgesia, limited by facility type. The lack of strong opioids, isoniazid and paediatric formulations is concerning. Inadequate drug availability prevents implementation of simple clinical pain and symptom control protocols, causing unnecessary distress. Research is needed to identify supply chain mechanisms that lead to these problems.
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    Best Practices in Developing a National Palliative Care Policy in Resource Limited Settings: Lessons from Five African Countries
    (Ecancermedicalscience, 2016) Luyirika, Emmanuel B.K.; Namisango, Eve; Garanganga, Eunice; Monjane, Lidia; Ginindza, Ntombi; Kiyange, Fatia
    Given the high unmet need for palliative care in Africa and other resource limited settings, it is important that countries embrace the public health approach to increasing access through its integration within existing healthcare systems. To give this approach a strong foundation that would ensure sustainability, the World Health Organisation urges member states to ensure that policy environments are suitable for this intervention. The development, strengthening, and implementation of national palliative care policies is a priority. Given the lack of a critical mass of palliative care professionals in the region and deficiency in documenting and sharing best practices as part of information critical for regional development, policy development becomes a complex process. This article shares experiences with regard to best practices when advocating the national palliative care policies. It also tells about policy development process, the important considerations, and cites examples of policy content outlines in Africa.
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    COVID-19 and Palliative Care Capacity, African Region
    (Bulletin of the World Health Organization, 2021) Afolabi, Oladayo A.; Abboah-Offei, Mary; Namisango, Eve; Chukwusa, Emeka; Oluyase, Adejoke O.; Luyirika, Emmanuel B.K.; Harding, Richard; Nkhoma, Kennedy
    Palliative care is included within the universal health coverage goal of the sustainable development goals as an essential health service and is considered a human right.1 The seventy-third World Health Assembly recommended palliative care as a core component within the coronavirus disease 2019 (COVID-19) response plans of Member States. However, the neglect of palliative care is a well established problem worldwide. Of the roughly 60 million people experiencing serious health-related suffering who would benefit from palliative care in a given year, over 80% live in developing countries where such care is scarce or non-existent.2 Mortality projections from the World Health Organization show an anticipated rapid increase in serious health-related suffering at the end of life in the coming decades.3 Delivering timely, appropriate and effective palliative care is a pressing challenge highlighted by the morbidity and mortality caused by COVID-19.
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    Cross Cultural Adaptation and Cognitive Testing of a Psycho-Social-Spiritual Healing Measure, the NIH Healing Experiences in All Life Stressors-NIH-HEALS
    (Global advances in health and medicine, 2022) Namisango, Eve; Luyirika, Emmanuel B. K.; Berger, Ann
    Cancer is associated with trauma and stress which impacts the physical, psychological, and spiritual/existential well-being of patients. Psychological/behavioral healing may help alleviate this distress and the associated health-related suffering. Psycho-Social-Spiritual healing outcome measures are thus needed to stimulate service development. The NIH Healing Experiences in All Life Stressors (NIH-HEALS), is a novel 35-item measure of psycho-social-spiritual healing, developed in USA and is yet to be validated and adapted for use in African countries.This study aimed to assess the face and content validity of the NIH-HEALS in the population of cancer patients in Uganda and to culturally adapt this measure.Cross-sectional study using cognitive interviewing alongside standard piloting. We recruited adult (18 years and above) patients with advanced cancer from Hospice Africa Uganda. Interviews were conducted in two phases, using the think aloud technique and concurrent probing and were audio recorded. Phase 1 was used to identify initial concerns around clarity of the statements, and phase 2 further explored whether the issues of clarity had been addressed, alongside the standard cognitive interview parameters. The transcripts were imported into NVivo-12 analyzed using the content analysis technique and categorized using Tourengeau’s information processing model.We recruited thirty-five (35) patients: phase one (n = 5) two (n = 30). The median completion time was 20 minutes. Problems identified included comprehension of some statements, words, and phrases, suggestions to include local examples, highlighting of potentially sensitive statements that lean towards difficult conversations, and some cultural differences in the construction of the “Trust and Acceptance” construct, our sample showed less emphasis on family/friend relations. This feedback was used to adapt the NIH-HEALS for the local context.The NIH-HEALS has sufficient face and content validity properties to be used among palliative cancer patients in Uganda. We propose some changes to inform the adaptation of this measure for the local context.
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    Data and Information Needs of Policymakers for Palliative Cancer Care: A Multi-Country Qualitative Study
    (BMC Medical Informatics and Decision Makin, 2021) Namisango, Eve; Ramsey, Lauren; Allsop, Matthew J.
    Despite regional efforts to address concerns regarding the burden of advanced cancer in Africa, urgent attention is still required. Widespread issues include late symptom presentation, inaccessibility of palliative care services, limited resources, poor data quality, disparity in data availability, and lack of stakeholder engagement. One way of helping to address these issues is by understanding and meeting the data and information needs of policymakers in palliative cancer care.To explore the views of policymakers regarding data availability, data gaps and preferred data formats to support policy and decision making for palliative cancer care in Nigeria, Uganda and Zimbabwe.A secondary analysis of interview data collected as part of a cross-sectional qualitative study that aimed to explore the data and information needs of patients, policymakers and caregivers in Nigeria, Uganda and Zimbabwe. Framework analysis, guided by the MEASURE evaluation framework, was used to qualitatively analyse the data.Twenty-six policymakers were recruited. The policymakers data and information concerns are aligned to the MEASURE evaluation framework of data and information use and include; assessing and improving data use (e.g. low prioritisation of cancer); identifying and engaging the data user (e.g. data processes); improving data quality (e.g. manual data collection processes); improving data availability (e.g. the accessibility of data); identifying information needs (e.g. what is ‘need to know’?); capacity building in core competencies (e.g. skills gaps); strengthening organisational data demand and use (e.g. policy frameworks); monitoring, evaluating and communicating of data demand and use (e.g. trustworthiness of data).We present evidence of data sources, challenges to their access and use, guidance on data needs for policymakers, and opportunities for better engagement between data producers, brokers and users. This framework of evidence should inform the development of strategies to improve data access and use for policy and decision making to improve palliative cancer services in participating countries with relevance to the wider region.
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    Developing a Short-form Version of the HIV Disability Questionnaire (SF-HDQ) for Use in Clinical Practice: a Rasch Analysis
    (Health and Quality of Life Outcomes, 2021) O’Brien, Kelly K.; Dzingina, Mendwas; Harding, Richard; Gao, Wei; Namisango, Eve; Avery, Lisa; Davis, Aileen M.
    Disability is an increasingly important health-related outcome to consider as more individuals are now aging with Human Immunodeficiency Virus (HIV) and multimorbidity. The HIV Disability Questionnaire (HDQ) is a patient-reported outcome measure (PROM), developed to measure the presence, severity and episodic nature of disability among adults living with HIV. The 69-item HDQ includes six domains: physical, cognitive, mental-emotional symptoms and impairments, uncertainty and worrying about the future, difficulties with day-to-day activities, and challenges to social inclusion. Our aim was to develop a short-form version of the HIV Disability Questionnaire (SF-HDQ) to facilitate use in clinical and community-based practice among adults living with HIV.We used Rasch analysis to inform item reduction using an existing dataset of adults living with HIV in Canada (n = 941) and Ireland (n = 96) who completed the HDQ (n = 1037). We evaluated overall model fit with Cronbach’s alpha and Person Separation Indices (PSIs) (≥ 0.70 acceptable). Individual items were evaluated for item threshold ordering, fit residuals, differential item functioning (DIF) and unidimensionality. For item threshold ordering, we examined item characteristic curves and threshold maps merging response options of items with disordered thresholds to obtain order. Items with fit residuals > 2.5 or less than − 2.5 and statistically significant after Bonferroni-adjustment were considered for removal. For DIF, we considered removing items with response patterns that varied according to country, age group (≥ 50 years versus < 50 years), and gender. Subscales were considered unidimensional if ≤ 5% of t-tests comparing possible patterns in residuals were significant.We removed 34 items, resulting in a 35-item SF-HDQ with domain structure: physical (10 items); cognitive (3 items); mental-emotional (5 items); uncertainty (5 items); difficulties with day-to-day activities (5 items) and challenges to social inclusion (7 items). Overall models’ fit: Cronbach’s alphas ranged from 0.78 (cognitive) to 0.85 (physical and mental-emotional) and PSIs from 0.69 (day-to-day activities) to 0.79 (physical and mental-emotional). Three items were rescored to achieve ordered thresholds. All domains demonstrated unidimensionality. Three items with DIF were retained because of their clinical importance.The 35-item SF-HDQ offers a brief, comprehensive disability PROM for use in clinical and community-based practice with adults living with HIV.
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    Do the Clinical Management Guidelines for Covid-19 in African Countries Reflect the African Quality Palliative Care Standards? A Review of Current Guideline
    (Journal of pain and symptom management, 2021) Afolabi, Oladayo A.; Abboah-Offei, Mary; Namisango, Eve; Luyirika, Emmanuel B.K.; Nkhoma, Kennedy
    Palliative care should be a component of COVID-19 management to relieve suffering, improve patient outcomes and save cost. We aimed to identify and critically appraise the palliative care recommendations within COVID-19 case management guidelines in African countries.The study employed systematic guideline review design. All guidelines from any country in Africa, of any language, published between December 2019 and June 2020 were retrieved through online search and email to in-country key contacts. We conducted a content analysis of the palliative care recommendations within the guidelines and appraised the recommendations using African Palliative Care Association standards for providing quality palliative care.We retrieved documents from 29 of 54 African countries. Fifteen documents from 15 countries were included in the final analysis, of which eight countries have identifiable PC recommendations in their COVID-19 management guidelines. Of these eight, only one country (South Sudan) provided comprehensive palliative care recommendations covering the domains of physical, psychological, social and spiritual wellbeing, two (Namibia and Uganda) addressed only physical and psychological wellbeing while the remaining five countries addressed only physical symptom management.Comprehensive palliative care which addresses physical, psychological, social and spiritual concerns must be prioritized within case management guidelines in African countries.
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    Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children’s Palliative Outcome Scale: A Qualitative Pilot Study
    (Journal of Palliative Medicine, 2021) Friedel, Marie; Boonen, Sabine; Harding, Richard; Downing, Julia; Namisango, Eve; Degryse, Jean-Marie; Aujoulat, Isabelle
    To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS).Instruments in French used to measure outcomes in pediatric palliative care are lacking.After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs.Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2.The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
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    Factors Affecting Palliative Care Development in Africa: In-Country Experts’ Perceptions in Seven Countries
    (Journal of Pain and Symptom Management, 2018) Rhee, John Y.; Garralda, Eduardo; Namisango, Eve; Luyirika, Emmanuel; de Lima, Liliana; Powell, Richard A.; Robinson, Carole A.; Centeno, Carlos
    Factors contributing to and impeding palliative care (PC) development in Africa can provide insights into current strategies for advancing PC.To identify key factors affecting PC development in African countries from in-country PC experts' perspectives.About 16 PC experts from seven African countries undertook semistructured interviews on PC development in their respective countries. An interpretive description approach was adopted, with data analyzed using constant comparison.Emerged themes included drivers, strengths, challenges, and aspirations for PC development in Africa. Drivers included advocates and pioneering organizations, HIV/AIDS, culture of caregiving, and the World Health Assembly PC resolution. Strengths included community health workers, the special role of nurses, diversity of services, and short training courses. Challenges included lack of PC education; lack of standardization in implementation; limited availability of and/or accessibility to morphine; poverty and disease burden; and lack of funding for PC. Aspirations included integration of PC, specialization in PC, nurse prescribing, and strong partnerships with Ministries of Health. Factors already highlighted in the literature were only briefly discussed.The key factors underpinning PC development in the seven countries contributed to the beginnings of PC in Africa, fueled by advocates who built on existing strengths to maximize opportunities. However, the current approach is at high risk in terms of its sustainability, and strategies for maximizing existing resources and growing infrastructure support are needed moving forward.
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    Foundation for the Future: Meeting the Psychosocial Needs of Children Living With HIV in South Africa and Uganda
    (Journal of HIV/AIDS & Social Services, 2013) McCleary-Sills, Jennifer; Kanesathasan, Anjala; Brakarsh, Jonathan; Dlamini, Kgethi; Namisango, Eve; Nasaba, Rose; Fritz, Katherine; Wong, Vincent J.
    Successes in diagnosing and treating pediatric HIV have necessitated care that extends beyond basic medical needs. However, capacity for providing childhood psychosocial support (PSS) remains limited. Programmatic research with young PLHIV, care providers and parents in Uganda and South Africa explored challenges in meeting the psychosocial needs of HIV-positive children. Three areas for childhood PSS were examined: disclosure, stigma, and grief/bereavement. This research identified programming gaps, strategies and good practices in five focal areas: providing immediate postdiagnosis support, stigma reduction, capacity building, addressing grief, and promoting peer support. Recommendations are presented for enhancing PSS for HIV-positive children in resource-limited settings.
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    “From Good Hearted Community Members we Get Volunteers” – An Exploratory Study of Palliative Care Volunteers across Africa
    (BMC palliative care, 2020) Loth, Carolin Clara; Namisango, Eve; Powell, Richard Antony; Pabst, Katharina Henny; Hamada, Mohamed; Radbruch, Lukas
    Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery.Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis.Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients’ families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers’ most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation.The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30–50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.rs.
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    How to Analyze Palliative Care Outcome Data for Patients in Sub-Saharan Africa: An International, Multicenter, Factor Analytic Examination of the APCA African POS
    (Journal of pain and symptom management, 2013) Harding, Richard; Selman, Lucy; Simms, Victoria M.; Agupio, Godfrey; Natalya, Dinat; Ikin, Barbara; Mmoledi, Keletso; Sebuyira, Lydia Mpanga; Mwangi-Powell, Faith; Namisango, Eve; Siegert, Richard J.
    The incidence of life-limiting progressive disease in sub-Saharan Africa presents a significant clinical and public health challenge. The ability to easily measure patient outcomes is essential to improving care.The present study aims to determine the specific factors (if any) that underpin the African Palliative Care Association African Palliative Outcome Scale to assist the analysis of data in routine clinical care and audit.Using self-reported data collected from patients with HIV infection in eastern and southern Africa, an exploratory factor analysis was undertaken with 1337 patients; subsequently, a confirmatory analysis was done on two samples from separate data sets (n = 445).Using exploratory factor analysis initially, both two- and three-factor solutions were examined and found to meet the criteria for simple structure and be readily interpretable. Then using confirmatory factor analysis on two separate samples, the three-factor solution demonstrated better fit, with Goodness-of-Fit Index values greater than 0.95 and Normative Fit Index values close to 0.90. The resulting three factors were 1) physical and psychological well-being, 2) interpersonal well-being, and 3) existential well-being.This analysis presents an important new opportunity in the analysis of outcome data for patients with progressive disease. It has advantages over both the total scoring of multidimensional scaling (which masks differences between domains) and of item scoring (which requires repeated analyses). The three factors map well onto the underlying concept and clinical goals of palliative care, and will enable audit of facility care.
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    Multi-centred Mixed-methods PEPFAR HIV Care & Support Public Health Evaluation: study protocol
    (BMC Public Health, 2010) Harding, Richard; Simms, Victoria; Penfold, Suzanne; Mwangi-Powell, Faith; Namisango, Eve; Higginson, Irene J.
    A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise curret provision of HIV care and support in East Africa, and to provide evidence-based direction to future care programming, and Public Health Evaluation was commissioned by the PEPFAR programme of the US Government.This paper described the 2-Phase international mixed methods study protocol utilising longitudinal outcome measurement, surveys, patient and family qualitative interviews and focus groups, staff qualitative interviews, health economics and document analysis.To describe the nature and scope of HIV care and support in two African countries, including the types of facilities available, clients seen, and availability of specific components of care [Study Phase 1]. Aim 2) To determine patient health outcomes over time and principle cost drivers [Study Phase 2].The study objectives are as follows. 1) To undertake a cross-sectional survey of service configuration and activity by sampling 10% of the facilities being funded by PEPFAR to provide HIV care and support in Kenya and Uganda (Phase 1) in order to describe care currently provided, including pharmacy drug reviews to determine availability and supply of essential drugs in HIV management. 2) To conduct patient focus group discussions at each of these (Phase 1) to determine care received. 3) To undertake a longitudinal prospective study of 1200 patients who are newly diagnosed with HIV or patients with HIV who present with a new problem attending PEPFAR care and support services. Data collection includes self-reported quality of life, core palliative outcomes and components of care received (Phase 2). 4) To conduct qualitative interviews with staff, patients and carers in order to explore and understand service issues and care provision in more depth (Phase 2). 5) To undertake document analysis to appraise the clinical care procedures at each facility (Phase 2). 6) To determine principle cost drivers including staff, overhead and laboratory costs (Phase 2).
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    Multidimensional Patient-Reported Problems within Two Weeks of HIV Diagnosis in East Africa: A Multicentre Observational Study
    (PLoS One, 2013) Simms, Victoria; Gikaara, Nancy; Munene, Grace; Atieno, Mackuline; Kataike, Jeniffer; Nsubuga, Clare; Banga, Geoffrey; Namisango, Eve; Irene J., Hagginson; Harding, Richard
    We aimed to determine for the first time the prevalence and severity of multidimensional problems in a population newly diagnosed with HIV at outpatient clinics in Africa.Recently diagnosed patients (within previous 14 days) were consecutively recruited at 11 HIV clinics in Kenya and Uganda. Participants completed a validated questionnaire, the African Palliative Outcome Scale (POS), with three underpinning factors. Ordinal logistic regression was used to evaluate risk factors for prevalence and severity of physical, psychological, interpersonal and existential problems.There were 438 participants (62% female, 30% with restricted physical function). The most prevalent problems were lack of help and advice (47% reported none in the previous 3 days) and difficulty sharing feelings. Patients with limited physical function reported more physical/psychological (OR = 3.22) and existential problems (OR = 1.54) but fewer interpersonal problems (OR = 0.50). All outcomes were independent of CD4 count or ART eligibility.Patients at all disease stages report widespread and burdensome multidimensional problems at HIV diagnosis. Newly diagnosed patients should receive assessment and care for these problems. Effective management of problems at diagnosis may help to remove barriers to retention in care.
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    A Novel Symptom Cluster Analysis among Ambulatory HIV/AIDS Patients in Uganda
    (AIDS care, 2015) Namisango, Eve; Harding, Richard; Katabira, Elly T.; Siegert, Richard J.; Atuhaire, Leonard; Moens, Katrien; Taylor, Steve
    Symptom clusters are gaining importance given HIV/AIDS patients experience multiple, concurrent symptoms. This study aimed to: determine clusters of patients with similar symptom combinations; describe symptom combinations distinguishing the clusters; and evaluate the clusters regarding patient socio-demographic, disease and treatment characteristics, quality of life (QOL) and functional performance. This was a cross-sectional study of 302 adult HIV/AIDS outpatients consecutively recruited at two teaching and referral hospitals in Uganda. Socio-demographic and seven-day period symptom prevalence and distress data were self-reported using the Memorial Symptom Assessment Schedule. QOL was assessed using the Medical Outcome Scale and functional performance using the Karnofsky Performance Scale. Symptom clusters were established using hierarchical cluster analysis with squared Euclidean distances using Ward’s clustering methods based on symptom occurrence. Analysis of variance compared clusters on mean QOL and functional performance scores. Patient subgroups were categorised based on symptom occurrence rates. Five symptom occurrence clusters were identified: Cluster 1 (n = 107), high–low for sensory discomfort and eating difficulties symptoms; Cluster 2 (n = 47), high–low for psycho-gastrointestinal symptoms; Cluster 3 (n = 71), high for pain and sensory disturbance symptoms; Cluster 4 (n = 35), all high for general HIV/AIDS symptoms; and Cluster 5 (n = 48), all low for mood-cognitive symptoms. The all high occurrence cluster was associated with worst functional status, poorest QOL scores and highest symptom-associated distress. Use of antiretroviral therapy was associated with all high symptom occurrence rate (Fisher’s exact = 4, P < 0.001). CD4 count group below 200 was associated with the all high occurrence rate symptom cluster (Fisher’s exact = 41, P < 0.001). Symptom clusters have a differential, affect HIV/AIDS patients’ self-reported outcomes, with the subgroup experiencing high-symptom occurrence rates having a higher risk of poorer outcomes. Identification of symptom clusters could provide insights into commonly co-occurring symptoms that should be jointly targeted for management in patients with multiple complaints.
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    Outcome measurement in paediatric palliative care: lessons from the past and future developments
    (Ann Palliat Med, 2018) Downing, Julia; Namisango, Eve; Harding, Richard
    The need for paediatric palliative care (PPC) globally is great yet there is limited evidence of the quality or outcomes of the care provided. The lack of an outcome measure for PPC has been consistently cited as one reason for the lack of robust evidence in the field. Thus recommendations have been made for the development of locally relevant, validated tools to measure outcomes for children.This paper reviews relevant outcomes and quality measures in PPC, the current state of science on outcome measurement for children and young people (CYP) with life-limiting and life-threatening conditions and the development of the African Children’s Palliative Outcome Scale (C-POS). Lessons learnt from the past are presented before looking ahead at the need for future developments in outcome measures in PPC. A narrative review was undertaken and authors have drawn upon reflective insights from their collective experiences.Outcomes can be measured in a variety of ways, and due to the multi-dimensional nature of PPC, outcomes can be complex and hard to measure. Whilst there are a variety of outcome measures for use in adult palliative care, a similar range of tools does not exist in PPC. Literature reviews have confirmed the absence of a multi-dimensional PPC outcome measurement tool. Following on from their success in developing an outcome scale for adults in Africa, the African Palliative Care Association (APCA) have developed a multi-dimensional outcome tool for PPC—the African C-POS. Tool development and validation followed the COSMIN guidance. The draft C-POS consists of 12 questions, 8 in Section A for the child, and 4 in Section B for the parents/carers. The tool has been developed across eight African countries and is the first specifically designed, multi-dimensional outcome measure for PPC. Lessons have been learnt in the development of outcome scales in palliative care, including those specifically for PPC such as: undertaking research in PPC; the definition of PPC; if you ask a child what their concerns are they will tell you; do you use child and or proxy report? do you have different tools for different ages? what methods of scoring should be used? is it an outcome tool, an assessment tool or both? the length of the outcome measure; the length of time it takes to develop; and, it won’t be perfect. Whilst progress has occurred through the development of the C-POS there is still a long way to go in the development of outcome measures for PPC. Future developments include: finalization and publication of the African C-POS; utilization of the C-POS in clinical practice, research and audit; collation and review of data sets; and the development of C-POS in different settings.The measurement of outcomes in PPC is an imperative. Whilst there are challenges in developing outcome tools and utilizing them in practice, these should not prevent us from advancing the field. The development of the first outcome measure for PPC the African C-POS is a key milestone in the ongoing development and utilization of outcome measures for PPC.
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    Pain Among Ambulatory HIV/AIDS Patients: Multicenter Study of Prevalence, Intensity, Associated Factors, and Effect
    (The Journal of Pain, 2012) Namisango, Eve; Harding, Richard; Atuhaire, Leonard; Ddungu, Henry; Katabira, Elly; Muwanika, Fred Roland; Powell, Richard A.
    This study aimed to determine the prevalence, intensity, associated factors, and effect of pain among ambulatory HIV/AIDS patients. Three-hundred two adult ambulatory HIV/AIDS patients were consecutively recruited from HIV/AIDS outpatient clinics at 2 teaching hospitals in Uganda. The presence and intensity of pain were self-reported using the Brief Pain Inventory (BPI); symptom data were collected using the Memorial Symptom Assessment Scale (MSAS-SF); and quality of life (QOL) was assessed using the Medical Outcome Scale-HIV. Forty-seven percent reported pain in the 7 days prior to the survey and pain was a symptom at the time of diagnosis for 68%. On the 0 to 10 numeric scale, 53% reported mild pain (1–4 rating), 20% reported moderate pain (5–6 rating) while 27% reported severe pain (7–10 rating). Gender was not associated with pain intensity, but reduced functional performance, increasing number of symptoms, advanced HIV disease , physical symptom distress (MSAS-SF), and number of health comorbidities were significantly associated with pain intensity (P < .04). Increasing pain intensity was associated with greater functional ability impairment (BPI functional interference index) and poorer QOL. Pain is a common symptom among ambulatory HIV/AIDS patients and has a debilitating effect on QOL. There is a significant unmet need for pain relief in the population.
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    Palliative Care and Catastrophic Costs in Malawi after a Diagnosis of Advanced Cancer:A prospective cohort study
    (The Lancet Global Health, 2021) Bates, Maya Jane; Tomeny, Ewan M.; Muula, Adamson S.; Manthalu, Gerald; Namisango, Eve; Masamba, Leo; Niessen, Louis W.
    Inclusive universal health coverage requires access to quality health care without financial barriers. Receipt of palliative care after advanced cancer diagnosis might reduce household poverty, but evidence from low-income and middle-income settings is sparse. In this prospective study, the primary objective was to investigate total household costs of cancer-related health care after a diagnosis of advanced cancer, with and without the receipt of palliative care. Households comprising patients and their unpaid family caregiver were recruited into a cohort study at Queen Elizabeth Central Hospital in Malawi, between Jan 16 and July 31, 2019. Costs of cancer-related health-care use (including palliative care) and health-related quality-of-life were recorded over 6 months. Regression analysis explored associations between receipt of palliative care and total household costs on health care as a proportion of household income. Catastrophic costs, defined as 20% or more of total household income, sale of assets and loans taken out (dissaving), and their association with palliative care were computed.We recruited 150 households. At 6 months, data from 89 (59%) of 150 households were available, comprising 89 patients (median age 50 years, 79% female) and 64 caregivers (median age 40 years, 73% female). Patients in 55 (37%) of the 150 households died and six (4%) were lost to follow-up. 19 (21%) of 89 households received palliative care. Catastrophic costs were experienced by nine (47%) of 19 households who received palliative care versus 48 (69%) of 70 households who did not (relative risk 0·69, 95% CI 0·42 to 1·14, p=0·109). Palliative care was associated with substantially reduced dissaving (median US$11, IQR 0 to 30 vs $34, 14 to 75; p=0·005). The mean difference in total household costs on cancer-related health care with receipt of palliative care was −36% (95% CI −94 to 594; p=0·707).Vulnerable households in low-income countries are subject to catastrophic health-related costs following a diagnosis of advanced cancer. Palliative care might result in reduced dissaving in these households. Further consideration of the economic benefits of palliative care is justified.