Browsing by Author "Harding, Richard"

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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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    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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    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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    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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    Generating an African Palliative Care Evidence Base: The Context, Need, Challenges, and Strategies
    (Journal of pain and symptom management, 2008) Harding, Richard; Powell, Richard A.; Downing, Julia; Connor, Stephen R.; Mwangi-Powell, Faith; Defilippi, Kath; Cameron, Sue; Garanganga, Eunice; Kikule, Ekiria; Alexander, Carla
    The enormous burden of progressive, incurable disease in sub-Saharan Africa is reflected in the epidemiology of cancer and HIV. However, there has been little research activity and evidence generated to inform appropriate and effective responses. Acollaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activites in African palliative care. Here, they report the methodological, ethical, logistic and capacity-based challenges of conducting research in the sub-Saharan context from their experience. A number of strategies and responses are presented.
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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 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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    Palliative Care-Related Self-Report Problems among Cancer Patients in East Africa: A Two-Country Study
    (Supportive Care in Cancer, 2014) Harding, Richard; Powell, Richard A.; Namisango, Eve; Merriman, Anne; Gikaara, Nancy
    Palliative care-related problems have not been measured in Africa in line with the WHO definition. This study aimed to measure the three-day period intensity of multidimensional problems (physical, psychological, social, and spiritual) among advanced cancer patients in Kenya and Uganda.Adults with advanced malignant disease gave self-report data to the African Palliative Outcome Scale (POS).Among 210 respondents, more than half had an underlying HIV diagnosis (51.9 %). The worst ranked POS items were pain and information. In three multivariable ordinal logistic regression models with the 3 POS factors as dependent variables, for the first model (factor 1 physical and psychological well-being), as age increased, the well-being also improved (B = 0.022, p = 0.037), and as physical function score worsened, factor score also worsened (B = −0.685, p < 0.001). In the second model (factor 2 interpersonal well-being), a trend toward significance was found for gender, with being male predicting a higher (better) factor score (B = 0.502, p = 0.067). For the third model (factor 3 existential and spiritual), increasing age was predictive of higher (better) factor score (B = 0.023, p = 0.032), and worsening function was predictive of lower (worse) factor score (B = −0.543, p < 0.001). This novel data revealed pain and information to plan for the future to affect patients most severely, underlining the importance of analgesia and social support. HIV infection did not affect the level of need. Our data suggest increasing need as function declines; therefore, home-based models with adequate family support are essential.
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    A Psychometric Evaluation of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) Scale With Palliative Care Samples in Three African Countries
    (Journal of pain and symptom management, 2014) Siegert, Richard; Ali, Zippy; Powell, Richard A.; Namisango, Eve; Mwangi-Powell, Faith; Gikaara, Nancy; Harding, Richard
    Although sub-Saharan Africa suffers the greatest burden of progressive illness, there are few outcome measures with adequate properties to measure needs and outcomes.To examine the psychometric properties of the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal) among people receiving palliative care in three African countries.Adult patients in South Africa, Kenya, and Uganda gave self-reported data to the core FACIT-G plus Pal subscale. Data were subjected to factor analysis, corrected item-total correlations, and Cronbach's α for full scale and subscales.The resulting four factors bear a strong similarity to the original Functional Assessment of Cancer Therapy-General in our sample of 461: physical symptoms, functional well-being, friends and family, and emotional well-being. Cronbach's α for the full 27-item scale was 0.90 and for the physical well-being, social/family well-being, emotional well-being, and functional well-being subscales, it was 0.83, 0.78, 0.80, and 0.87, respectively. Varimax rotation of the 19-item FACIT-Pal scale showed three clear interpretable factors. Factor 1, a sense of purpose and meaning in life; Factor 2, physical symptoms; and Factor 3, social integration. For the 19-item FACIT-Pal, Cronbach's α was 0.81, and individual corrected item-total correlations ranged from 0.24 to 0.61. Cronbach's α for the eight items comprising Factor 1 (meaning in life) was 0.83. For the other two factors, it was 0.70 (physical symptoms, six items) and 0.68 (social integration, three items).The FACIT-Pal is a reliable multidimensional scale for people with life-limiting incurable diseases in sub-Saharan Africa, and the observed factors are interpretable and clinically meaningful.
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    Public Priorities and Preferences for End-of-Life Care in Namibia
    (Journal of pain and symptom management, 2014) Powell, Richard A.; Namisango, Eve; Gikaara, Nancy; Moyo, Sherperd; Mwangi-Powell, Faith N.; Harding, Richard
    Although quality end-of-life care provision is an international public health issue, the majority of evidence is not generated in low- and middle-income countries that bear a disproportionate burden of progressive illnesses.To identify the priorities and preferences of the Namibian public for end-of-life care.Using a cross-sectional study design, data were collected in the country's capital, Windhoek, from November to December 2010. In total, 200 respondents were recruited. The mean age was 27 years (SD 7.5; range 18–69), with nearly all (n = 199; 99.5%) expressing a religious affiliation. Being in pain was reported as the most concerning of nine common end-of-life symptoms and problems (n = 52; 26.1%), and the most important care-related aspect was having as much information as wanted (n = 144; 72%). The majority (64%) would want their end-of-life care to focus on improving their quality of life rather than extending it, with 40% not wanting to know if they had limited time left to live. Hospital (n = 96; 48%) and home (n = 64; 32%) were the most preferred places of death. The most important end-of-life priority was keeping a positive attitude (n = 128; 64%). Having had a close relative or friend diagnosed with a serious illness was associated with a 2.3 increase in the odds of preference for a hospital death (odds ratio = 2.34, P = 0.009, 95% CI 1.23–4.47).This study identified a number of areas that need to be pursued in future research to explore factors that may affect patient preferences and priorities in end-of-life care in Namibia.
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    Quality of Life and Wellbeing among HIV Outpatients in East Africa: A Multicentre Observational study
    (BMC infectious diseases, 2014) Harding, Richard; Simms, Victoria; Penfold, Suzanne; Downing, Julia; Namisango, Eve; Mwangi-Powell, Faith; Atieno, Mackuline; Higginso, Irene J.
    Global health investment has reduced HIV mortality and transmission. However, little is known of patient-reported outcomes alongside ART rollout. This study aimed to measure wellbeing using patient-reported outcome measures (PROMS) among outpatients at PEPFAR-funded facilities.In a multicentre 2 country cross-sectional study, adults attending 12 facilities in Kenya and Uganda gave self-reported data on quality of life (physical and mental wellbeing dimensions), functional and a measure of multidimensional problems (physical, psychological, social and spiritual).Among the 1,337 participants, multidimensional problems were more common in psychological, spiritual and social domains than in physical. In multivariable analysis using GEE to adjust for facility effect, the mental health subscale of quality of life was lower for people with limited functional status (B = -5.27, 95% CI -5.99, 1. -4.56 p < 0.001) and higher for wealthier people (B = 0.91, 95% CI 0.48, 1.33, p < 0.001). The physical health subscale of quality of life was lower for those with limited functional status (B = -8.58, 95% CI -9.46 to -7.70, p < 0.001) and those who had a caregiver present (B = -1.97, 95% CI -3.72 to -0.23, p = 0.027), higher for wealthier people (B = 1.14, 95% CI 0.65, 1.64, p < 0.001), and positively associated with CD4 count (B = 1.61, 95% CI 1.08-2.14, p < 0.001). Multidimensional problems were more burdensome for people with limited functional status (B = -2.06, 95% CI -2.46 to -1.66, p < 0.001), and less burdensome with more education (B = 0.63, 95% CI 0.25-1.00, p = 0.001) or ART use (B = 0.94, 95% CI 0.34-1.53, p = 0.002).Multidimensional problems are highly prevalent, and worse with declining function. Importantly, ART use does not appear to be protective for self-reported physical and mental dimensions of quality of life. Assessment and management of self-reported wellbeing must form part of HIV care and treatment services to ensure maximum benefit from ART investment.
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    Research intoPalliative Care in Sub-Saharan Africa
    (The Lancet Oncology, 2013) Harding, Richard; Selman, Lucy; Powell, Richard A.; Namisango, Eve; Ali, Zipporah; Gikaara, Nancy; Higginson, Irene
    Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.
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    Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review
    (The Milbank Quarterly, 2019) Evans, Catherine J.; Ison, Lucy; Namisango, Eve; Bone, Anna E.; Harding, Richard
    In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide.We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively.Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered.Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.
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    Symptom Clusters in People Living with HIV Attending Five Palliative Care Facilities in Two Sub-Saharan African Countries: A Hierarchical Cluster Analysis
    (PLoS One, 2015) Moens, Katrien; Siegert, Richard J.; Taylor, Steve; Namisango, Eve; Harding, Richard
    Symptom research across conditions has historically focused on single symptoms, and the burden of multiple symptoms and their interactions has been relatively neglected especially in people living with HIV. Symptom cluster studies are required to set priorities in treatment planning, and to lessen the total symptom burden. This study aimed to identify and compare symptom clusters among people living with HIV attending five palliative care facilities in two sub-Saharan African countries.
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    Symptoms and Concerns Among Children and Young People with Life-Limiting and Life-Threatening Conditions: A Systematic Review Highlighting Meaningful Health Outcome
    (The Patient-Patient-Centered Outcomes Research, 2019) Namisango, Eve; Bristowe, Katherine; Allsop, Matthew J.; Abas, Melanie; Higginson, Irene J.; Downing, Julia; Harding, Richard
    The design and provision of quality pediatric palliative care should prioritize issues that matter to children and their families for optimal outcomes.This review aims to identify symptoms, concerns and outcomes that matter to children and young people (“young people”) with terminal illnesses and their families. Findings from the systematic review will inform the development of a relevant framework of health outcomes.This is a systematic literature review across multiple databases for identification of eligible primary evidence. Data sources included PsycINFO, MEDLINE, Embase, CINAHL, OpenGrey, and Science Direct Journals, searched from 1 August 2016 to 30 July 2017. The study also incorporates consultations with experts in the field, citation searches via Scopus, and a hand search of reference lists of included studies.Of the 13,567 articles that were evaluated, 81 studies were included. Most of these studies (n = 68) were from high-income countries and foused on young people with cancer (n = 58). A total of 3236 young people, 2103 family carers, 108 families, and 901 healthcare providers were included in the studies. Young people did not contribute to data in 30% of studies. Themes on priority concerns are presented by the following domains and health outcomes: (1) physical (n = 62 studies), e.g., physical symptoms; (2) psychological (n = 65), e.g., worry; (3) psychosocial (n = 31), e.g., relationships; (4) existential (n = 37), e.g., existential loss; and (5) “other” (n = 39), e.g., information access.Burdensome symptoms and concerns affect young people with malignant and nonmalignant conditions and occur across the disease trajectory; pediatric palliative care should not be limited to the end-of-life phase. A child–family-centered framework of health outcomes, spanning the patient, family, and quality of service levels is proposed to inform service development. Future research should address gaps identified across the literature (i.e., the involvement of young people in research, evidence for developing countries, and a focus on nonmalignant conditions.