Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access.
Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries.
Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs.
Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco).
Participants: Informal carers of decedents who had received palliative care participated in the study.
Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly (F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction.
Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.
INTRODUCTION: Ethical issues arise daily in the delivery of palliative care. Despite much (largely theoretical) literature, evidence from specialist palliative care practitioners (SPCPs) about real-world ethical challenges has not previously been synthesised. This evidence is crucial to inform education and training and adequately support staff. The aim of this systematic review is to synthesise the evidence regarding the ethical challenges which SPCPs encounter during clinical practice.
METHODS AND ANALYSIS: We will conduct a systematic review with narrative synthesis of empirical studies that use inductive methods to describe the ethical challenges reported by SPCPs. We will search multiple databases (MEDLINE, Philosopher's Index, EMBASE, PsycINFO, LILACS, WHOLIS, Web of Science and CINAHL) without time, language or geographical restrictions. Keywords will be developed from scoping searches, consultation with information specialists and reference to key systematic reviews in palliative care and bioethics. Reference lists of included studies will be hand-searched. 10% of retrieved titles and abstracts will be independently dual screened, as will all full text papers. Quality will be dual assessed using the Mixed-Methods Appraisal Tool (2018). Narrative synthesis following Popay et al (2006) will be used to synthesise findings. The strength of resulting recommendations will be assessed using the Grading of Recommendations Assessment, Development and Evaluation approach for qualitative evidence (GRADE-CERQual).
ETHICS AND DISSEMINATION: As this review will include only published data, no specific ethical approval is required. We anticipate that the systematic review will be of interest to palliative care practitioners of all backgrounds and educators in palliative care and medical ethics. Findings will be presented at conferences and published open access in a peer-reviewed journal.
TRIAL REGISTRATION NUMBER: CRD42018105365.
Advance care planning has been shown to improve patient outcomes and is recommended as part of routine care for people with a life-limiting illness. Nevertheless, developing an advance care plan can be complex and challenging for both patients and family members, and the clinicians who support them. One complexity is that illness and its treatments often cannot be deeply understood without lived experience. In this paper, we explore this idea, highlighting how lived experience can bring about unpredictable changes in an individual's values and preferences. We examine the implications of such 'transformative experiences' for advance care planning, using the hypothetical case study of Jean, an older person with advanced kidney disease. Finally, we consider consequences for clinical practice and how an understanding of transformative experience might enhance current approaches to advance care planning.
We conducted in Kenya a mixed-methods randomised controlled trial (RCT) of a nurse-led palliative care intervention integrated with anti-retroviral therapy (ART) provision for the management of HIV. Here we report qualitative findings showing increased resistance to HIV-associated stigma among trial participants. A mixed method design was chosen to enable identification of the active ingredients of the intervention and exploration of participants' experiences of receiving the intervention. The RCT was conducted from July 2011 to November 2012 in a community hospital in the city of Mombasa, Kenya, with a sample of 120 adults with HIV on ART. Thirty participants were purposively selected to take part in a qualitative exit interview, based on study arm and mental health outcome. Inductive thematic analysis revealed increased resistance to HIV-associated stigma in both the intervention and control groups. Specifically, patients in both groups described benefit from the social support, compassionate care, and open and respectful communication they received through study participation. Participants described improved self-image, increased access to social agency, and increased resistance to HIV-associated stigma. Our findings suggest that there is potential to increase resistance to stigma through simple mechanisms of support, compassion, and improved communication in routine care. The self-reported impact of trial participation on stigma also has implications for future trials in populations in resource-constrained settings where stigma is common.
Purpose of review: Despite the rising prevalence of heart failure in Africa, it remains unclear what supportive and palliative care services are required to meet patient needs. This review highlights recent contributions to knowledge of the supportive and palliative care needs of heart failure patients in Africa.
Recent findings: Multiple epidemiological studies demonstrate the population-level burden of heart failure in Africa, characterized by low levels of ischaemic heart disease and a young mean patient age. However, few studies have addressed patients' specific palliative and supportive care needs. Only one recent published study investigated the quality of life of heart failure patients in Africa, and although conference abstracts suggest more research is forthcoming, these remain scarce. For service implementation, research is again sparse, but promising recent developments, including a hospital-based palliative care service for organ failure patients and a community-based programme to diagnose and manage heart failure, present future research avenues.
Summary: Despite advances in epidemiological knowledge, very little research has investigated the illness experience and multidimensional needs of individuals. Obtaining this evidence through culturally sensitive research is essential to future development and testing of new and existing palliative care services for heart failure patients in Africa.
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.
L'orientation clinique recommande l'intervention précoce de soins palliatifs, mais l'ampleur des besoins est inconnue et les critères de référence fondés sur des preuves sont absents. Cette étude vise à : 1) Mesurer le seuil approprié de la prévalence des patients hospitalisés pour les soins palliatifs ; 2) Identifier les caractéristiques pertinentes des patients éligibles aux soins palliatifs ; 3) Proposer des critères d'orientation cliniques fondés sur des preuves. A cette fin, l'étude s'est appuyée sur les fichiers adultes de patients hospitalisés dans un CHU au Royaume-Uni.
Cet article présente un modèle holistique pour les soins palliatifs et la recherche clinique qui développe et améliore les modèles précédents en reconnaissant pleinement la place de la culture dans la maladie.
Les modèles globaux sont essentiels pour la pratique des soins centrés sur le patient. Cependant, ces modèles ont jusqu'à présent largement négligé le rôle de la culture et de la recherche du sens dans l'expérience de la maladie.
Une approche phénoménologique de la maladie met en lumière trois principes : que la maladie porte un sens culturel, que la recherche de sens liée à la finitude de la vie humaine est fondamentale dans l'expérience de la maladie, et que les récits sur la maladie sont des manifestations culturellement conditionnées par la quête de sens.
Un modèle global de soins palliatifs est présenté dans ce document sur la base de ces principes.
Objective : 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. Study Design and Setting : 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. Results : 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 alpha =0.73 ; Well-being factor alpha =0.69, Transcendence factor alpha =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. Conclusion : 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.
Origine : BDSP. Notice produite par INIST-CNRS qR0xoH8l. Diffusion soumise à autorisation
Objective : 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. Study Design and Setting : 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. Results : 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 (alpha=0.83). Conclusion : 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.
Origine : BDSP. Notice produite par INIST-CNRS 8R0xGHm8. Diffusion soumise à autorisation