Palliative Care as a Human Right

Examines the state of palliative care for AIDS patients worldwide, approaches to palliative care as a human right and a public health issue, legal foundations, challenges to its promotion and provision, and strategies and mechanisms for enhancing access

Neuropathic pain in AIDS patients prior to antiretroviral therapy

Objectives: To measure the prevalence, severity and morbidity of neuropathic pain in AIDS patients, prior to the initiation of antiretroviral therapy. Design: A prospective, cross sectional and descriptive-analytical study. Setting: The Kalafong Hospital HIV clinic in Pretoria. Subjects: All patients with confirmed AIDS, who were referred to the Kalafong HIV clinic in order to be initiated on antiretroviral (ARV) therapy, during the period August 2006 to March 2007. Outcome measures: Data were collected regarding the presence and severity of neuropathic pain in each subject. Pain of predominantly neuropathic origin (POPNO) was identified using the Neuropathic Pain Diagnostic Questionnaire (DN4). Numerical rating scales (NRS), adapted from the Brief Pain Inventory, were used to measure pain severity and pain-related interference with six aspects of daily living. Results: Of the 354 patients studied, 20.9% (95% CI: 16.8% to 25.2%) had POPNO. This pain was significantly more frequent in patients who were male, had lower CD4+ counts or higher viral load levels and those using tuberculosis treatment. Eighty percent of patients with POPNO experienced significant pain (worst pain severity ≥ 5 out of 10 on a NRS). Pain-related interference was highest for enjoyment of life, mood and ability to work. There was a significant positive correlation between severity of pain and pain-related interference for all domains of daily living evaluated. Conclusions: POPNO results in significant suffering and impaired functioning in patients with AIDS. It is therefore imperative that clinicians should assess patients with AIDS for the presence and severity of neuropathic pain and manage it, using the most recent evidence based guidelines

Calling for advocacy, education and public policy actions on pain control for patients with cancer in Africa

It is of serious concern that there is a lack of focus on pain management in patients with cancer in Africa. Most patients with cancer present with advanced disease on diagnosis, experiencing moderate to severe pain and in need of palliative care. Integration of palli-ative and oncology care is recommended by European Society of Medical Oncology (ESMO) and by the World Health Assembly resolution WHA67.19.At the recent ESMO Summit Africa 2020, a Pain Workshop was attended by representatives from across Africa. A consensus was reached to escalate concerns about lack of pain management in patients with cancer in Africa and to call on ESMO to make universal cancer pain control, and integrated oncology and palliative care as an immediate priority area

Maintaining wellbeing for South Africans receiving ART: The burden of pain and symptoms is greater with longer ART exposure

Background. Physical and psychological symptom burden among people with HIV infection is associated with poor quality of life, poorer treatment adherence, viral rebound and risk behaviour. Symptomatology has not been investigated among outpatients in sub-Saharan Africa. Objective. To measure the seven-day period prevalence, burden and correlates of pain and other physical and psychological symptoms among HIV patients receiving antiretroviral therapy (ART).Methods. This was a cross-sectional self-report study. A total of 378 patients were interviewed using validated tools in three South African public sector clinics.Results. The most prevalent symptoms were feeling sad (64%), feeling irritable (61.6%), worry (60.8%), numbness and tingling in hands/ feet (59.8%), and sexual problems (51%). In multivariate analysis, later disease stage was associated with worse psychological symptom burden (β=0.359; 95% confidence interval (CI) 0.202 - 0.516; p≤0.001), global symptom burden (β=0.365; 95% CI 0.204 - 0.526; p<0.001) and number of symptoms (β=0.308; 95% CI 0.150 - 0.465; p<0.001). Those receiving treatment for a greater number of years also reported higher burden for physical (β=0.083; 95% CI 0.037 - 0.129; p≤0.001), psychological (β=0.068; 95% CI 0.019 - 0.117; p=0.007) and global symptoms (β=0.065; 95% CI 0.016 - 0.115; p=0.010), and a greater number of symptoms (β=0.081; 95% CI 0.032 - 0.130; p=0.001). Conclusions. The data reveal a high symptom burden despite treatment. Detailed symptom assessment and control continues to be required in the era of treatment.

Wellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures

BACKGROUND: Despite the high mortality rates of HIV and cancer in sub-Saharan Africa, there are few outcome tools and no comparative data across conditions. This study aimed to measure multidimensional wellbeing among advanced HIV and/or cancer patients in three African countries, and determine the relationship between two validated outcome measures. METHODS: Cross-sectional self-reported data from palliative care populations in Kenya, Uganda and South Africa using FACIT-G+Pal and POS measures. RESULTS: Among 461 participants across all countries, subscale "social and family wellbeing" had highest (best) score. Significant country effect showed lower (worse) scores for Uganda on 3 FACIT G subscales: Physical, Social + family, and functional. In multiple regression, country and functional status accounted for 21% variance in FACIT-Pal. Worsening functional status was associated with poorer POS score. Kenyans had worse POS score, followed by Uganda and South Africa. Matrix of correlational coefficients revealed moderate correlation between the POS and FACIT-Pal core scale (0.60), the FACIT-G and POS (0.64), and FACIT-G+Pal with POS (0.66). CONCLUSIONS: The data reveal best status for family and social wellbeing, which may reflect the sample being from less individualistic societies. The tools appear to measure different constructs of wellbeing in palliative care, and reveal different levels of wellbeing between countries. Those with poorest physical function require greatest palliative and supportive care, and this does not appear to differ according to diagnosis

Validation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>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).</p> <p>Results</p> <p>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.</p> <p>Conclusions</p> <p>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.</p

Meeting information needs of patients with incurable progressive disease and their families in South Africa and Uganda: multicentre qualitative study

Objectives To explore the information needs of patients with progressive, life limiting disease and their family caregivers in South Africa and Uganda and to inform clinical practice and policy in this emerging field

Quality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study

<p>Abstract</p> <p>Background</p> <p>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.</p> <p>Methods</p> <p>A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (<it>Function, Symptom, Interpersonal, Well being, Transcendent</it>) 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 <it>Total QOL </it>score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda.</p> <p>Results</p> <p>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 <it>Total </it>score 17.32 (possible range 0 to 30). Patients scored most poorly on <it>Function </it>(mean 0.21), followed by <it>Well being </it>(2.59), <it>Symptoms </it>(5.38), <it>Transcendent </it>(5.50), <it>Interpersonal </it>(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 <it>Well being </it>(<it>Z </it>= -2.778, p = 0.005), <it>Transcendence </it>(<it>Z </it>= -2.693, p = 0.007) and <it>Total QOL </it>(<it>Z </it>= -2.564, p = 0.01). Global QOL score was most weakly correlated with <it>Total QOL </it>(r = 0.37) and the <it>Transcendent </it>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.</p> <p>Conclusions</p> <p>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 <it>Function </it>domain warrants further research.</p