Hospice Palliative Care Association of South Africa

Cape Town, South Africa

Hospice Palliative Care Association of South Africa

Cape Town, South Africa
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Harding R.,King's College London | Albertyn R.,Red Cross | Sherr L.,University College London | Gwyther L.,Hospice Palliative Care Association of South Africa | Gwyther L.,University of Cape Town
Journal of Pain and Symptom Management | Year: 2014

Context. The progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available. Objectives. To systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice. Methods. A systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated. Results. In terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services. Conclusion. Pediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa. © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.


Bausewein C.,Ludwig Maximilians University of Munich | Daveson B.A.,King's College London | Currow D.C.,Flinders University | Downing J.,Makerere University | And 7 more authors.
Palliative Medicine | Year: 2016

Background: Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care. Aim: To provide expert recommendations on outcome measurement in palliative care in clinical practice and research. Methods: Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper. Results: In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients' needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed. Conclusion: The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics. © 2015 The Author(s).


Selman L.,King's College London | Siegert R.J.,King's College London | Higginson I.J.,King's College London | Agupio G.,Hospice Africa Uganda | And 9 more authors.
Journal of Clinical Epidemiology | Year: 2012

Objective: To describe the dimensionality of a measure of spiritual well-being (SWB) (the "Spirit 8") in palliative care (PC) patients in South Africa and Uganda, and to determine SWB in this population. Study Design and Setting: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI). Translated questionnaires were administered to consecutively recruited patients. Factor analysis and Rasch analysis were used to examine the dimensionality of eight items from the Well-being and Transcendent subscales. The resulting measure (the "Spirit 8") was used to determine levels of SWB. Results: Two hundred eighty-five patients recruited; mean age 40.1; 197 (69.1%) female; primary diagnosis HIV (80.7%), cancer (17.9%). Internal consistency of the eight-item scale was α = 0.73; Well-being factor α = 0.69, Transcendence factor α = 0.68. Rasch analysis suggested unidimensionality. Mean SWB score was 26.01 (standard deviation 5.68). Spiritual distress was present in 21.4-57.9%. Attending the Ugandan service, HIV and younger age were associated with poorer SWB scores. Conclusion: The Spirit 8 is a brief, psychometrically robust, unidimensional measure of SWB for use in South African and Ugandan PC research. Further research testing the Spirit 8 and examining the SWB of PC patients in South Africa and Uganda is needed to improve spiritual care. © 2012 Elsevier Inc. All rights reserved.


Selman L.E.,King's College London | Higginson I.J.,King's College London | Agupio G.,Hospice Africa Uganda | Dinat N.,University of Witwatersrand | And 8 more authors.
Health and Quality of Life Outcomes | Year: 2011

Background: Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool.Methods: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda.Results: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA.Conclusions: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research. © 2011 Selman et al; licensee BioMed Central Ltd.


Harding R.,King's College London | Defilippi K.,Hospice Palliative Care Association of South Africa | Cameron D.,University of Pretoria
Palliative Medicine | Year: 2016

Background: The new World Health Organization's 'End TB' strategy specifies palliative care within its strategic pillars. Limited data on patient-reported problems are available to inform an effective care response. Aim: We aimed to (1) identify most burdensome problems, (2) compare intensity of problems for drug-susceptible and drug-resistant tuberculosis and (3) identify predictors of problem identifiers. Design: Cross-sectional self-report quantitative study. Setting/participants: Self-report palliative care problems (physical, psychological, social and spiritual) were collected among patients on admission to a general district hospital with tuberculosis and multidrug-resistant tuberculosis wards in South Africa. Results: Totally, 114 patients were recruited. The items with worst score responses were worry (60.5%), pain (42.1%), help and advice to plan for the future (35.1%), symptoms (29.0%) and ability to share feelings (25.1%). In ordinal logistic regression, age was predictive of a higher (worse) score for total Palliative Outcome Scale total score (0.058, 95% confidence interval = 0.0018-0.099, p = 0.005) and Factor 2 (interpersonal wellbeing: 0.038, 95% confidence interval = 0.003-0.073, p = 0.031). Interestingly, multidrug-resistant tuberculosis was predictive of lower (better) score for both total Palliative Outcome Scale score and Factor 1 (physical and psychological wellbeing). Weight, human immunodeficiency virus status and prior treatment were not significantly associated with any of the three. Conclusion: Currently, patients with drug-susceptible tuberculosis are only admitted to hospital with complications, explaining their worse scores. The high burden of physical and psychosocial problems experienced by our sample provides strong evidence of the need for palliative care alongside potentially curative options. © The Author(s) 2016.


Harding R.,King's College London | Selman L.,King's College London | Agupio G.,Hospice Africa Uganda | Dinat N.,Witwatersrand Palliative Care | And 8 more authors.
Health and Quality of Life Outcomes | Year: 2010

Background: Despite the burden of progressive incurable disease in Africa, there is almost no evidence on patient care or outcomes. A primary reason has been the lack of appropriate locally-validated outcome tools. This study aimed to validate a multidimensional scale (the APCA African Palliative Outcome Scale) in a multi-centred international study.Methods: Validation was conducted across 5 African services and in 3 phases: Phase 1. Face validity: content analysis of qualitative interviews and cognitive interviewing of POS; Phase 2. Construct validity: correlation of POS with Missoula-Vitas Quality of Life Index (Spearman's rank tests); Phase 3. Internal consistency (Cronbach's alpha calculated twice using 2 datasets), test-retest reliability (intraclass correlation coefficients calculated for 2 time points) and time to complete (calculated twice using 2 datasets).Results: The validation involved 682 patients and 437 family carers, interviewed in 8 different languages. Phase 1. Qualitative interviews (N = 90 patients; N = 38 carers) showed POS items mapped well onto identified needs; cognitive interviews (N = 73 patients; N = 29 carers) demonstrated good interpretation; Phase 2. POS-MVQoLI Spearman's rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbach's Alpha was 0.6 on both datasets, indicating expected moderate internal consistency; test-retest found high intra-class correlation coefficients for all items (0.78-0.89); median time to complete 7 mins, reducing to 5 mins at second visit.Conclusions: The APCA African POS has sound psychometric properties, is well comprehended and brief to use. Application of this tool offers the opportunity to at last address the omissions of palliative care research in Africa. © 2010 Harding et al; licensee BioMed Central Ltd.


Harding R.,King's College London | Selman L.,King's College London | Agupio G.,Hospice Africa Uganda | Dinat N.,University of Witwatersrand | And 9 more authors.
Journal of Pain and Symptom Management | Year: 2012

Context: Despite HIV remaining life limiting and incurable, very little clinical research focus has been given to the prevalence and related burden of physical and psychological symptoms for those accessing palliative care. Despite evidence of problems persisting throughout the trajectory and alongside treatment, scant attention has been paid to these manageable problems. Objectives: This study aimed to measure the seven-day period prevalence and correlates of physical and psychological symptoms, and their associated burden, in HIV-infected individuals attending palliative care centers in sub-Saharan Africa. Methods: Consecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables. Results: Two hundred twenty-four patients participated. The most common symptoms were pain in the physical dimension (82.6%) and worry in the psychological dimension (75.4%). Interestingly, 71.4% reported hunger. Women, and those with worse physical function, were more likely to experience burden. However, being on antiretroviral therapy (ART) was not associated with global, physical, or psychological symptom burden. Conclusion: This study is the first to report physical and psychological symptom burden in HIV-infected populations receiving palliative care in sub-Saharan Africa. Despite increasing access to ART, these burdensome and manageable problems persist. The assessment of these problems is essential alongside assessment of ART virological outcomes. © 2012 U.S. Cancer Pain Relief Committee Published by Elsevier Inc. All rights reserved.


PubMed | University of Bonn, Azienda Ospedaliera Santa Maria Nuova di Reggio Emilia, Vrije Universiteit Brussel, University of Coimbra and 5 more.
Type: Journal Article | Journal: Palliative medicine | Year: 2015

Outcome measurement plays an increasing role in improving the quality, effectiveness, efficiency and availability of palliative care.To provide expert recommendations on outcome measurement in palliative care in clinical practice and research.Developed by a European Association for Palliative Care Task Force, based on literature searches, international expert workshop, development of outcome measurement guidance and international online survey. A subgroup drafted a first version and circulated it twice to the task force. The preliminary final version was circulated to wider expert panel and 28 international experts across 20 European Association for Palliative Care member associations and the European Association for Palliative Care Board of Directors and revised according to their feedback. The final version was approved by the European Association for Palliative Care Board for adoption as an official European Association for Palliative Care position paper.In all, 12 recommendations are proposed covering key parameters of measures, adequate measures for the task, introduction of outcome measurement into practice, and national and international outcome comparisons and benchmarking. Compared to other recommendations, the White Paper covers similar aspects but focuses more on outcome measurement in clinical care and the wider policy impact of implementing outcome measurement in clinical palliative care. Patient-reported outcome measure feedback improves awareness of unmet need and allows professionals to act to address patients needs. However, barriers and facilitators have been identified when implementing outcome measurement in clinical care that should be addressed.The White Paper recommends the introduction of outcome measurement into practice and outcomes that allow for national and international comparisons. Outcome measurement is key to understanding different models of care across countries and, ultimately, patient outcome having controlled for differing patients characteristics.


Sithole Z.,Hospice Palliative Care Association of South Africa | Dempers C.,Hospice Palliative Care Association of South Africa
Journal of Pain and Symptom Management | Year: 2010

In KwaZulu Natal (KZN), the Hospice Palliative Care Association of South Africa (HPCA) has made a significant start in terms of addressing the palliative care needs of prisoners. A formal partnership has been established between the KZN Department of Correctional Services and the HPCA that allows staff at two correctional facilities to be mentored and equipped to provide palliative care to offenders. This pilot project has the potential for rollout at other facilities across the country. It is hoped that this vulnerable population group will be better able to access palliative care, which is a basic human right, for life-threatening and terminal conditions. © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.


Defilippi K.M.,Hospice Palliative Care Association of South Africa | Cameron S.,Hospice Palliative Care Association of South Africa
Journal of Pain and Symptom Management | Year: 2010

This article describes a pilot project, run over a two-year period in the Eastern Cape province of South Africa. It was aimed at assessing the impact of a model of introducing a palliative care component and professional supervision of community caregivers on the quality of care given to people living with HIV/AIDS and their families. The use of the African Palliative Care Association African Palliative Outcome Scale as an assessment tool is outlined, and the challenges and outcomes encountered by the various role players are listed. The overall conclusion is that this model is a cost-effective way of increasing access to palliative care in resource poor settings. © 2010 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc.

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