Browsing by Author "Higginson, Irene"
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- ItemOpen AccessQuality of life among patients receiving palliative care in South Africa and Uganda: a multi-centred study(BioMed Central Ltd, 2011) Selman, Lucy; Higginson, Irene; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Ikin, Barbara; Harding, RichardBACKGROUND: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.
- ItemOpen AccessTreatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy(BioMed Central Ltd, 2012) Lowther, Keira; Simms, Victoria; Selman, Lucy; Sherr, Lorraine; Gwyther, Liz; Kariuki, Hellen; Ahmed, Aabid; Ali, Zipporah; Jenkins, Rachel; Higginson, Irene; Harding, RichardBACKGROUND: Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations.METHODS/DESIGN:This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of [less than or equal to]0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context.DISCUSSION:The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa.ClinicalTrials.gov Identifier: NCT01608802
- ItemOpen AccessValidation of a core outcome measure for palliative care in Africa: the APCA African Palliative Outcome Scale(BioMed Central Ltd, 2010) Harding, Richard; Selman, Lucy; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia; Panjatovic, Barbara; Higginson, IreneBACKGROUND: 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.
- ItemOpen AccessWellbeing among sub-Saharan African patients with advanced HIV and/or cancer: an international multicentred comparison study of two outcome measures(BioMed Central Ltd, 2014) Harding, Richard; Selman, Lucy; Ali, Zippy; Powell, Richard; Namisango, Eve; Mwangi-Powell, Faith; Gwyther, Liz; Gikaara, Nancy; Higginson, Irene; Siegert, RichardBACKGROUND: 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.