Julia Downing

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUNDnCancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally.nnnMETHODSnA telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying.nnnRESULTSnOf 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal).nnnCONCLUSIONSnAt least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

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

BackgroundDespite 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.MethodsValidation 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 (Spearmans rank tests); Phase 3. Internal consistency (Cronbachs 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).ResultsThe 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 Spearmans rank correlations were low-moderate as expected (N = 285); Phase 3. (N = 307, 2nd assessment mean 21.2 hours after first, SD 7.2) Cronbachs 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.ConclusionsThe 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.

Implementing patient reported outcome measures (PROMs) in palliative care--users' cry for help

BackgroundPatient-reported outcome measurement (PROM) plays an increasingly important role in palliative care. A variety of measures exists and is used in clinical care, audit and research. However, little is known about professionals views using these measures. The aim of this study is to describe the use and experiences of palliative care professionals with outcome measures.MethodsA web-based online survey was conducted in Europe and Africa. Professionals working in clinical care, audit and research in palliative care were invited to the survey via national palliative care associations and various databases. Invitation e-mails were sent with a link to the questionnaire.ResultsOverall participation rate 42% (663/1592), overall completion rate 59% (392/663). The majority of respondents were female (63.4%), mean age 46 years (SD 9). 68.1% respondents from Europe and 73.3% from Africa had experiences with outcome measures in palliative care. Non-users reported time constraints, burden, lack of training and guidance as main reasons. In clinical care/audit, assessment of patients situation, monitoring changes and evaluation of services were main reasons for use. Choice of OMs for research was influenced by validity of the instrument in palliative care and comparability with international literature. Main problems were related to patient characteristics, staff, and outcome measures. Participants expressed the need for more guidance and training in the use of PROMs.ConclusionsProfessionals need more support for the use and implementation of PROMs in clinical practice and research through training and guidance in order to improve patient care.

The prevalence and burden of symptoms amongst cancer patients attending palliative care in two African countries

BACKGROUNDnThe 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.nnnMETHODSnThe 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.nnnRESULTSnOf 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 dont look like myselfn=21 (18.8%) and lack of energy n=20 (17.9%).nnnDISCUSSIONnPain and psychological problems were four of the five most common symptoms, found in more than 3 out of 4 patients. Our samples 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.

Generating an African palliative care evidence base: The context, need, challenges, and strategies

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. A collaborative of clinicians, academics and advocates have been active in the design, delivery and reporting of research activities 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.

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. Design Semistructured qualitative interview study. Setting Four palliative care services in South Africa and one in Uganda, covering rural, urban, and peri-urban locations. Participants 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. Results 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. Conclusions 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.

Provision of pain- and symptom-relieving drugs for HIV / AIDS in sub-Saharan Africa.

CONTEXTnAlthough pain and burdensome symptoms among HIV-infected persons can be effectively managed, the availability of opioids and other symptom-controlling drugs is a particular challenge in sub-Saharan Africa.nnnOBJECTIVESnThis study aimed to identify current drug availability and prescribing practices in 12 sub-Saharan African countries and to examine the barriers and potential facilitators for use of opioids and other key HIV/AIDS symptom-controlling drugs.nnnMETHODSnThis was a cross-sectional survey, integrating data from palliative care facilities and competent authorities within ministries of health in 12 African countries.nnnRESULTSnOf 62 responding facilities, problems were reported in accessing named nonopioids, with a small number of facilities unable to dispense them. Less than half the facilities were currently prescribing opioids of any strength. Further problems were identified in terms of the availability and supply continuity of named antiemetics and anxiolytics. The data identified a number of systemic problems, suggesting that opioid supply issues are similar to less controlled drugs, such as antiemetics. Among competent authorities, there was no agreement on whether further opioid expansion was possible. Integration of data from care facilities and competent authorities highlighted a disparity in the understanding of the availability of specific drugs, with competent authorities naming drugs that were not listed by any responding facility in their respective country.nnnCONCLUSIONnThis study shows that opioid expansion needs to balance supply and skills: Currently there are insufficient trained clinical personnel to prescribe, and supply is unreliable. Efforts to expand supply should ensure that they do not weaken current systems.

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

BackgroundQuality 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.MethodsA 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.Results285 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.ConclusionsFeeling 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.

Prevalence, burden, and correlates of physical and psychological symptoms among HIV palliative care patients in sub-Saharan Africa: an international multicenter study.

CONTEXTnDespite 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.nnnOBJECTIVESnThis 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.nnnMETHODSnConsecutive patients in five care centers across two countries completed the Memorial Symptom Assessment Scale-Short Form, with additional demographic and disease-oriented variables.nnnRESULTSnTwo 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.nnnCONCLUSIONnThis 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.

Outcomes 'out of africa': the selection and implementation of outcome measures for palliative care in Africa

BackgroundEnd-of-life care research across Africa is under-resourced and under-developed. A central issue in research in end-of-life care is the measurement of effects and outcomes of care on patients and families. Little is known about the experiences of health professionals selection and implementation of outcome measures (OM) in clinical care, research, audit, or teaching in Africa.MethodsAn online survey was undertaken of those using outcome measures across the region, as part of the PRISMA project. A questionnaire addressing the use of OMs was developed for a similar survey in Europe and adapted for Africa. Participants were sampled through the contacts database of APCA. Invitation emails were sent out in January 2010 and reminders in February 2010.Results168/301 invited contacts (56%) from 24 countries responded, with 78 respondents having previously used OM (65% in clinical practice, 12% in research and 23% for both). Main reasons for not using OM were a lack of guidance/training on using and analysing OM, with 49% saying that they would use the tools if this was provided. 40% of those using OM in clinical practice used POS, and 80% used them to assess, evaluate and monitor change. The POS was also the main tool used in research, with the principle criteria for use being validation in Africa, access to the tool and time needed to complete it. Challenges to the use of tools were shortage of time and resources, lack of guidance and training for the professionals, poor health status of patients and complexity of OM. Researchers also have problems analysing OM data. The APCA African POS was the most common version of the POS used, and was reported as a valuable tool for measuring outcomes. Respondents indicated the ideal outcome tool should be short, multi-dimensional and easy to use.ConclusionThis was the first survey on professionals views on OM in Africa. It showed that the APCA African POS was the most frequently OM used. Training and support are needed to help professionals utilise OM in palliative care, and OMs have an ongoing and important role in palliative care in Africa.