Lucy E Selman

Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't".

Background: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life. Aims: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients’ and carers’ preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. Design: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III–IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians. Setting: A tertiary hospital in London, UK. Results: Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified. Conclusions: The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.

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.

Meeting the communication and information needs of chronic heart failure patients.

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III-IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.

Research into palliative care in sub-Saharan Africa

Roughly half a million people die of cancer in sub-Saharan Africa every year. Despite rapid expansion of palliative care for cancer, coverage remains woefully inadequate. The WHO public health strategy for palliative care aims to increase access to palliative care services through its integration into health-care systems. We present the available evidence for the four WHO strategy pillars of policy, education, drug availability, and implementation, and propose a fifth pillar of research activity to stimulate improvement of care. Increased attention to the generation of research evidence is essential to achieve quality and coverage of appropriate palliative care for patients with advanced cancer in sub-Saharan Africa. The use of locally validated, patient-reported outcome measures is an important advance in the measurement and improvement of care and patient wellbeing. Palliative care for patients with cancer in Africa currently receives far less research attention than does palliative care for patients with HIV/AIDS, but in view of projected increasing cancer incidence in the region, generation of local evidence to inform and allow assessment of palliative care for patients with cancer is urgently needed.

Experience of persistent psychological symptoms and perceived stigma among people with HIV on antiretroviral therapy (ART): A systematic review.

BACKGROUND Advances in HIV care have resulted in increasing numbers of HIV patients receiving antiretroviral therapy and achieving viral control. This has led to a focus on the biomedical aspects of care, leaving the data on psychological and social problems relatively neglected; in fact they have never before been systematically reviewed. If present and unmanaged, psychological and social problems are associated with unnecessary suffering and non-adherence to medication, with potentially serious clinical and public health consequences. OBJECTIVE To assess the prevalence of depression and anxiety reported in the literature, and the presence or absence of the experience of stigma among HIV positive people on antiretroviral therapy. DESIGN AND REVIEW METHODS A systematic review in line with PRISMA guidelines. The prevalence data from retained studies were analysed by study location and data quality. DATA SOURCES Five databases were systematically searched (Embase, PsychINFO, MEDLINE and British Nursing index and Web of Science) from 1996 (first availability of highly effective antiretroviral therapy) to August 2013 using a predefined search strategy. RESULTS Sixty-six original studies identified the prevalence of depression, anxiety and presence or absence of the experience of stigma. The mean point prevalence of depression was 33.60% (SD 19.47) with lower reported point prevalence in high income countries (25.81% (15.21)) compared to low and middle income countries (41.36% (21.42)). The one-to four-week period prevalence of depression was 39.79% (21.52), similar in high income countries and low and middle income countries. The point prevalence of anxiety was 28.38% (17.07), with a higher prevalence in low and middle income countries (33.92% (10.64)) compared with high income countries (21.53% (22.91)) with wide variability. The mean point prevalence of stigma was 53.97% (22.06) and 1 year period prevalence 52.11% (25.57). Heterogeneity in both sampling and methodology prevented meta-analysis of this data. CONCLUSION HIV positive patients on antiretroviral therapy report a higher prevalence of depression and anxiety than the general population, which nursing assessment and practice should address. Over half of HIV positive people report experiencing stigma. The difficulties with heterogeneous studies should be addressed through the development of a cross-culturally validated, multidimensional assessment tool in this population, and an increase in data disaggregated by risk groups.

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.

Hospice and Palliative Care Development in India: A Multimethod Review of Services and Experiences

Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress.

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

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.

A Psychometric Evaluation of Measures of Spirituality Validated in Culturally Diverse Palliative Care Populations

CONTEXT Despite the need to accurately measure spiritual outcomes in diverse palliative care populations, little attention has been paid to the properties of the tools currently in use. OBJECTIVES This systematic review aimed to appraise the psychometric properties, multifaith appropriateness, and completion time of spiritual outcome measures validated in multicultural advanced cancer, HIV, or palliative care populations. METHODS Eight databases were searched to identify relevant validation and research studies. A comprehensive search strategy included search terms in three categories: palliative care, spirituality, and outcome measurement. Inclusion criteria were: validated in advanced cancer, HIV, or palliative care populations and in an ethnically diverse context. Included tools were evaluated with respect to psychometric properties (validity, reproducibility, responsiveness, and interpretability), multifaith appropriateness, and time to complete. RESULTS A total of 191 articles were identified, yielding 85 tools. Twenty-six tools (representing four families of measures and five individual tools) met the inclusion criteria. Twenty-four tools demonstrated good content validity and 12 demonstrated adequate internal consistency. Only eight tools demonstrated adequate construct validity, usually because specific hypotheses were not stated and tested. Seven tools demonstrated adequate test-retest reliability; two tools showed adequate responsiveness, and two met the interpretability criterion. Data on the religious faith of the population of validation were available for 11 tools; of these, eight were tested in multifaith populations. CONCLUSION Results suggest that, at present, the McGill Quality of Life Questionnaire, the Measuring the Quality of Life of Seriously Ill Patients Questionnaire, and the Palliative Outcome Scale are the most appropriate multidimensional measures containing spiritual items for use in multicultural palliative care populations. However, none of these measures score perfectly on all psychometric criteria, and their multifaith appropriateness requires further testing.

How to analyze palliative care outcome data for patients in Sub-Saharan Africa: an international, multicenter, factor analytic examination of the APCA African POS.

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 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 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.