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Richard Harding,
Lucy Selman,
Victoria M Simms,
Suzanne Penfold,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Barbara Ikin,
Thandi Mashao, Keletso Mmoledi,
Lydia Mpanga Sebuyira,
Tony Moll,
Faith Mwangi-Powell,
Eve Namisango,
Richard A Powell,
Frank H Walkey,
Irene J Higginson,
Richard J Siegert
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ABSTRACT: CONTEXT: 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. OBJECTIVES: 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. METHODS: Using self-reported data collected from patients with HIV infection in the 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). RESULTS: 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. CONCLUSION: 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 the 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.
Journal of pain and symptom management 09/2012; · 2.42 Impact Factor
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Richard Harding,
Lucy Selman,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Wei Gao,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Anthony Moll,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Irene J Higginson
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ABSTRACT: BACKGROUND: Despite global clinical guidance that HIV patients should have multidimensional care integrated into their management, there has been very limited data to guide practice since the advent of treatment. This study aimed to determine the three-day period intensity of problems (physical, psychological, social and spiritual) among HIV patients receiving integrated palliative care in sub-Saharan Africa, and to identify associations with problem severity. METHODS: A sample of 230 consecutive adult patients attending five sites in South Africa and Uganda gave self-report data using a well-validated outcome scale. Multivariable regression models determine the association of patient characteristics with intensity of three scale factors. RESULTS: The most burdensome problems were (in descending order) pain, worry, symptoms, and adequate information to plan for the future. Interestingly, CD4 counts were available on file for only 59.1% of patients. In multivariate analyses, being cared for at home was associated with poorer physical/psychological factor score (B=-0.192, 95% CI -2.566 -0.464, p=0.005), while being on ART was associated with better factor score (B=0.187, 95% CI=0.424 23.80, p=0.005). For the existential/spiritual factor, being cared for at home was associated with a worse factor score (B=-0.306, 95% CI -2.776 -1.128, p<0.001). ART use was not associated with either the interpersonal or spiritual/existential factors. DISCUSSION: These self-report data reveal a high burden of both physical and psychological problems, and that communication from professionals is insufficient. Patients receiving home care may require additional support to enhance wellbeing, and treatment may not affect interpersonal and existential/spiritual wellbeing.
Sexually transmitted infections 08/2012; · 2.18 Impact Factor
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Richard Harding,
Lucy Selman,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Irene J Higginson
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ABSTRACT: 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.
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.
Consecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables.
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.
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.
Journal of pain and symptom management 06/2012; 44(1):1-9. · 2.42 Impact Factor
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ABSTRACT: Since the advent of antiretrovirals, HIV disease has largely come to be considered a chronic disease for those able to access treatment. As such, the concept of 'living well' with HIV is important. Increasing evidence suggests a high symptom burden in HIV that persists in the presence of treatment.
Our study aimed to measure the prevalence and burden of pain and other physical and psychological symptoms among South African HIV-positive patients attending highly active antiretroviral therapy (HAART) clinics.
The study design was a cross-sectional survey. Simple random sampling was used to recruit 385 adult participants.
The sample had a median age of 40 years (Q1 - Q3=33 - 46) and 98.4% were on HAART. The mean latest CD4 count for the participants was 355.06±219/mm³. The mean number of symptoms of the 32 symptoms on the MSAS-SF experienced by participants was 10.24±5.71 (range 1 - 28). All 4 psychological symptoms were in the top 10 most prevalent symptoms, with feeling sad being the most prevalent symptom overall.
The high prevalence of symptoms and the high symptom burden experienced by the participants in this survey suggest inadequate symptom control and highlight the palliative care needs of an ambulant patient population already on HAART. Extension of life without reasonable efforts to also address the patient's quality of life is not ethically justifiable. In addition, more research appears to be required to answer whether these findings are associated with sub-optimal HAART adherence.
South African medical journal = Suid-Afrikaanse tydskrif vir geneeskunde 06/2012; 102(6):499-500. · 2.04 Impact Factor
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Lucy Selman,
Richard J Siegert,
Irene J Higginson,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Richard Harding
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ABSTRACT: 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.
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.
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.
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.
Journal of clinical epidemiology 04/2012; 65(4):434-43. · 2.96 Impact Factor
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Lucy Selman,
Richard J Siegert,
Irene J Higginson,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Richard Harding
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ABSTRACT: To examine the factor structure of the Missoula Vitas Quality of Life Index (MVQOLI) in palliative care patients in South Africa and Uganda and to assess the tool's appropriateness for measuring quality of life (QOL) in this context.
Cross-sectional survey using the MVQOLI, a 26-item QOL measure containing five subscales (Function, Symptoms, Interpersonal, Well being, and Transcendent), in five palliative care services in South Africa and Uganda.
Two hundred eighty-five patients were recruited; mean age was 40.1 years; 197 (69.1%) were female; primary diagnoses were human immunodeficiency virus infection (80.7%) and cancer (17.9%). A five-factor solution, accounting for 55% of variance, presented the best model of fit. The factors corresponded relatively closely to the original subscales, with only 4 of the 20 items not loading on the factor corresponding to the appropriate subscale. Internal consistency was high (α=0.83).
We found evidence of five factors underpinning the MVQOLI in a large sample of South African and Ugandan palliative care patients. The five factors corresponded reasonably well to the original subscales, suggesting that it is a promising measure for use in this population. However, further testing of its psychometric properties, comprehensibility, and scoring require further research in sub-Saharan Africa.
Journal of clinical epidemiology 04/2011; 64(8):913-24. · 2.96 Impact Factor
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Lucy E Selman,
Irene J Higginson,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Richard Harding
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ABSTRACT: 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.
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.
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.
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.
Health and Quality of Life Outcomes 01/2011; 9:21. · 2.11 Impact Factor
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Richard Harding,
Lucy Selman,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Lydia Mpanga Sebuyira,
Barbara Ikin,
Irene J Higginson
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ABSTRACT: The majority of cancer presentations in Africa are advanced and incurable, with incidence of malignancies projected to increase significantly. Despite the African cancer burden, almost nothing is known about the symptomatology of malignant progressive disease. This study aimed to determine the symptom prevalence and burden amongst advanced cancer patients in two African countries.
The Memorial Symptom Assessment Schedule Short Form (MSAS-SF) was used to measure the 7-d period prevalence and associated burden of multidimensional symptoms amongst adult patients attending palliative care in South Africa and Uganda. Further demographic and clinical variables were collected.
Of the 112 patients recruited, 22 (19.6%) had an underlying HIV diagnosis. The most common cancer primaries were breast (N=24), cervix (N=21) and lung (N=14). The mean number of symptoms was 18 (SD=6.6). The five most prevalent symptoms were pain (87.5%), lack of energy (77.7%), feeling sad (75.9%), feeling drowsy (72.3%) and worrying (69.6%). The five symptoms ranked as most severe were as follows: pain n=26 (23.2%), sexual problems n=24 (21.4%), weight loss n=21 (18.8%), 'I don't look like myself'n=21 (18.8%) and lack of energy n=20 (17.9%).
Pain and psychological problems were four of the five most common symptoms, found in more than 3 out of 4 patients. Our sample's reported mean number of symptoms was far higher than reported in other global studies. These data can inform the delivery of appropriate clinical care. The prevalence of multidimensional symptoms underlines the importance of holistic approaches to patient assessment and management, taking account of multiple and potentially interacting symptoms and locally appropriate intervention.
European journal of cancer (Oxford, England: 1990) 01/2011; 47(1):51-6. · 4.12 Impact Factor
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Richard Harding,
Lucy Selman,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Sebuyira,
Barbara Panjatovic,
Irene Higginson
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ABSTRACT: Abstract
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.
Health and Quality of Life Outcomes. 01/2010;
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Richard Harding,
Lucy Selman,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Tony Moll,
Lydia Mpanga Sebuyira,
Barbara Panjatovic,
Irene J Higginson
[show abstract]
[hide abstract]
ABSTRACT: 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.
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).
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.
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.
Health and Quality of Life Outcomes 01/2010; 8:10. · 2.11 Impact Factor
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Lucy Selman,
Irene J Higginson,
Godfrey Agupio,
Natalya Dinat,
Julia Downing,
Liz Gwyther,
Thandi Mashao, Keletso Mmoledi,
Anthony P Moll,
Lydia Mpanga Sebuyira,
Barbara Panajatovic,
Richard Harding
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ABSTRACT: 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.
Semistructured qualitative interview study.
Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations.
90 patients and 38 family caregivers enrolled in palliative care services; 28 patients had cancer, 61 had HIV infection (including 6 dual HIV/cancer diagnoses), and 1 had motor neurone disease.
Five themes emerged from the data. (1) Information sources: a lack of information from general healthcare providers meant that patients and caregivers had to draw on alternative sources of information. (2) Information needs: patients and caregivers reported needing more information in the key areas of the causes and progression of the disease, its symptoms and treatment, and financial/social support. (3) Impact of unmet needs: poor provision of information had a detrimental effect on patients' and caregivers' ability to cope. (4) Communication: negative experiences of communication with general healthcare staff were reported (misinformation, secrecy, insensitivity). (5) Barriers to effective provision of information: barriers related to symptoms, culture, time constraints in hospital, and paternalism in general health care.
Lack of information was a major theme for both patients and carers, who had important unanswered questions relating to living with a progressive incurable disease. Evidence based recommendations for clinicians are presented, including the proactive provision of information tailored to individual patients and families.
BMJ (Clinical research ed.). 02/2009; 338:b1326.
