CONTEXT: There is rapidly increasing need for palliative care in Greater China due to rapidly aging populations.
OBJECTIVES: This study aimed to systematically review and appraise evidence for palliative care needs, models of care, interventions, and outcomes in Greater China.
METHODS: Four databases (MEDLINE, EMBASE, CINAHL, PsycINFO) were searched, with hand searching of local journals and databases. Narrative synthesis was applied to the qualitative and quantitative evidence.
RESULTS: Nineteen qualitative studies and 47 quantitative studies were retained. With respect to care needs, nine themes were synthesised: pain control, reduced aggressive end-of-life care, truth telling, physical, emotional and spiritual support, and achieving preferred place of care/death. Informal caregivers expressed their needs for education and burden reduction. Healthcare professionals called for training and national policy support. Twenty-four studies evaluated interventions, mostly among advanced cancer patients. Positive effects were suggested for improvements in quality of life, pain, anxiety and depression, readmission rate, and costs. Models of care evaluated were mostly specialist palliative care delivered in various settings (hospitals, residential care and home). Outcome measures used were grouped into six categories of construct: quality of life, pain, physical assessment, psycho-spiritual assessment, quality of care, and implementation assessment. Limited rigorous randomised controlled trials is available to document intervention outcomes, and some problems (such as high attrition rates) reduced the strength of the evidence.
CONCLUSION: Palliative care services within Greater China should pay more attention to management of non-malignant disease, and to integration into primary services. Policy support is key to establishing culturally appropriate person-centred services.
BACKGROUND: Care for people with progressive illness should be person-centred and account for their cultural values and spiritual beliefs. There are an estimated 1.7 billion Muslims worldwide, largely living in low-and middle-income countries.
AIMS: This study aimed to identify, appraise, and integrate the evidence for the experiences and preferences of Muslim patients/families for end-of-life care in Muslim-majority countries
DESIGN: Systematic review DATA SOURCES: PsychoINFO, MEDLINE, Embase, Global Health, CINAHL, Cochrane Library and Registry of Clinical Trials Trial, Pubmed, ASSIA, Social Services Abstracts, Sociological Abstracts, Social Policy & Practice, and Scopus were searched until December 2018. Handsearching was performed, and grey literature, included. Qualitative studies analysed using thematic analysis and quantitative component provided triangulation.
RESULTS: The initial search yielded n=5,098 papers, of which n=30 met the inclusion criteria. A total of 5,342 participants (4,345 patients, 81.3%) were included; 97.6% had advanced cancer. The majority (n = 22) of studies were quantitative. Three themes and sub-themes from qualitative studies were identified using thematic analysis: selflessness (burden to others and caregiver responsibilities), ambivalence (hope and hopelessness) and strong beliefs in Islam (beliefs in death and afterlife, closeness to Allah). Qualitative studies reported triangulation; demonstrating conflicts in diagnosis disclosure and total pain burden experienced by both patients and families.
CONCLUSION: Despite the scarce evidence of relatively low quality, the analysis revealed core themes. To achieve palliative care for all in line with the 'total pain' model, beliefs must be identified and understood in relation to decision-making processes and practices.
PURPOSE OF REVIEW: There is a high prevalence of delirium in palliative care patients. This review aims to evaluate the effects of the pharmacological and nonpharmacological interventions used to manage delirium symptoms in this patient group.
RECENT FINDINGS: A recent study has suggested there is no role for antipsychotic medication in the management of delirium in palliative care patients, which is a move away from previous expert opinion. In addition, recent findings suggest there may be a role for the use of antipsychotics in combination with benzodiazepines in the management of agitated delirium.
SUMMARY: It is too early to abandon the use of antipsychotic medication entirely in the management of delirium, however there remains inadequate evidence to support the routine use of either pharmacological or nonpharmacological interventions for delirium treatment. Clinicians should determine the delirium subtype and severity, using this to inform the most appropriate pharmacological treatment if required. Further rigorously designed research is needed to seek clarity over whether the alleviation of symptoms is dose dependent, and to determine whether there is a severity threshold over which pharmacological interventions are most effective. Future research is required to evaluate nonpharmacological interventions in this population.
BACKGROUND: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care.
AIM: To identify the core components that characterise and differentiate existing models of specialist palliative care in the United Kingdom.
DESIGN: Mixed-methods study: (1) semi-structured interviews to identify criteria, (2) two-round Delphi study to rank/refine criteria, and (3) structured interviews to test/refine criteria.
SETTING/PARTICIPANTS: Specialist palliative care stakeholders from hospice inpatient, hospital advisory, and community settings.
RESULTS: (1) Semi-structured interviews with 14 clinical leads, from eight UK organisations (five hospice inpatient units, two hospital advisory teams, five community teams), provided 34 preliminary criteria.
(2) Delphi study: Round 1 (54 participants): thirty-four criteria presented, seven removed and seven added. Round 2 (30 participants): these 34 criteria were ranked with the 15 highest ranked criteria, including setting, type of care, size of service, diagnoses, disciplines, mode of care, types of interventions, ‘out-of-hours’ components (referrals, times, disciplines, mode of care, type of care), external education, use of measures, bereavement follow-up and complex grief provision.
(3) Structured interviews with 21 UK service leads (six hospice inpatients, four hospital advisory and nine community teams) refined the criteria from (1) and (2), and provided four further contextual criteria (team purpose, funding, self-referral acceptance and discharge).
CONCLUSION: In this innovative study, we derive 20 criteria to characterise and differentiate models of specialist palliative care - a major paradigm shift to enable accurate reporting and comparison in practice and research.
Background: Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (a = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
When patients face advanced illness, their experience of care is especially important. In palliative care, we often rely on the accounts of bereaved relatives to report the quality of end-of-life care, and there are no validated patient-reported measures of the experience of care. We report therefore on a new questionnaire, Views on Care (VOC), to address this gap. It consists of four questions (see the following link for full questionnaire: www.pos-pal.org) selected/refined from St Christopher’s Index of Patient Priorities (SKIPP)1, which address patients’ evaluation of (1) change in their main concerns, (2) benefit from palliative services, (3) previous and (4) current quality of life (3 and 4 adapted from EORTC QLQ-C15-PAL – well-validated in advanced illness2).
BACKGROUND: Routine use of outcome measures in palliative care is recommended to demonstrate and improve quality of care. The use of outcome measures is relatively recent in UK specialist palliative care services and understanding their use in practice is key to successful implementation. We therefore aimed to explore how patient-centred outcome measures are used in specialist palliative care, and identify key considerations for implementation.
METHODS: Multi-method qualitative study (semi-structured interviews and non-participant observation). Patients, family caregivers and health professionals were purposively sampled from nine specialist palliative care services (hospice, hospital and community settings) in London, UK. Framework analysis, informed by the Consolidated Framework for Implementation Research (CFIR), was undertaken.
RESULTS: Thirty eight interviews and nine observations were conducted. Findings are presented according to the five CFIR domains: (I) intervention: participants highlighted advantages, disadvantages and appropriateness of outcome measures in palliative care; (II) outer setting: policy and national drivers are necessary to encourage use of outcome measures; (III) inner setting: information technology infrastructure, organisational drive, and support from peers and leadership were institutional factors that shaped the use of outcome measures; (IV) individual: clear rationale for using outcome measures and skills to use them in practice were essential; (V) implementation: stepwise introduction of outcome measures, regular feedback sessions, and champions/facilitators were important to strengthen routine use.
CONCLUSIONS: All CFIR domains need consideration for effective implementation. Outcome data needs to be fed back to and interpreted for professionals in order to improve and sustain outcome data collection, and drive meaningful improvements in palliative care.
INTRODUCTION: Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision.
METHODS AND ANALYSIS: Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set.
ETHICS AND DISSEMINATION: The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public.
TRIAL REGISTRATION NUMBER: ISRCTN90752212.
BACKGROUND: Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes.
AIM: To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level.
DESIGN: In-depth qualitative interviews, analysed using Framework analysis.
PARTICIPANTS/SETTING: Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community).
RESULTS: 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation.
CONCLUSION: Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.
PURPOSE OF REVIEW: Recognizing the rising prevalence of heart failure in China, patients with heart failure have substantial palliative needs. This review highlights recent evidence on the epidemic of heart failure, identifies needs and potential benefit of palliative care in heart failure, and sets future strategic policy and research directions in China.
RECENT FINDINGS: Epidemiological studies demonstrate the prevalence of heart failure among women is higher than men in China and increases substantially with age. However, few studies have addressed the palliative needs of Chinese heart failure patients. The main themes from this review include: Healthcare providers should be culturally sensitive whenever assessing symptoms and needs. Locally validated, brief outcome measures are called for to identify symptoms and needs of Chinese heart failure patients. Palliative care should be better integrated into the management of heart failure through increased training for healthcare providers, policy development, financial support, and cultural acceptance of palliative care.
SUMMARY: Large-scale epidemiological studies are urgently needed to assess the current situation of heart failure in China, alongside interventional studies to drive the development of innovative palliative care services to address the needs of Chinese heart failure patients.
BACKGROUND: Phase of Illness describes stages of advanced illness according to care needs of the individual, family and suitability of care plan. There is limited evidence on its association with other measures of symptoms, and health-related needs, in palliative care.
AIMS: The aims of the study are as follows. (1) Describe function, pain, other physical problems, psycho-spiritual problems and family and carer support needs by Phase of Illness. (2) Consider strength of associations between these measures and Phase of Illness.
DESIGN AND SETTING: Secondary analysis of patient-level data; a total of 1317 patients in three settings. Function measured using Australia-modified Karnofsky Performance Scale. Pain, other physical problems, psycho-spiritual problems and family and carer support needs measured using items on Palliative Care Problem Severity Scale.
Results: Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale items varied significantly by Phase of Illness. Mean function was highest in stable phase (65.9, 95% confidence interval = 63.4–68.3) and lowest in dying phase (16.6, 95% confidence interval = 15.3–17.8). Mean pain was highest in unstable phase (1.43, 95% confidence interval = 1.36–1.51). Multinomial regression: psycho-spiritual problems were not associated with Phase of Illness (2 = 2.940, df = 3, p = 0.401). Family and carer support needs were greater in deteriorating phase than unstable phase (odds ratio (deteriorating vs unstable) = 1.23, 95% confidence interval = 1.01–1.49). Forty-nine percent of the variance in Phase of Illness is explained by Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale.
Conclusion: Phase of Illness has value as a clinical measure of overall palliative need, capturing additional information beyond Australia-modified Karnofsky Performance Scale and Palliative Care Problem Severity Scale. Lack of significant association between psycho-spiritual problems and Phase of Illness warrants further investigation.