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BACKGROUND: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. AIM: To synthesize and appraise the evidence about patients with advanced illness and their caregivers' attitudes and preferences towards palliative and end-of-life care in Latin America. DESIGN: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. DATA SOURCES: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. RESULTS: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver's role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients' preference to be informed about their condition contrasting with caregivers' reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. CONCLUSION: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.
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Cuidadores , Assistência Terminal , Humanos , América Latina , Cuidados Paliativos , Preferência do PacienteRESUMO
OBJECTIVE: Adapt and validate the NECPAL instrument in Chile. DESIGN: Prospective, longitudinal, analytical study for validation of the instrument in 5 stages: cultural adaptation, content validation, pilot test, application, and statistical analysis. PLACE: Four primary care centers of the South East Metropolitan Health Service, in Santiago, Chile. PARTICIPANTS: Primary health care physicians and nurses for cultural adaptation and application, and palliative care experts for content validation. MAIN MEASUREMENTS: Cultural adaptation was carried out through cognitive interviews. Content validity was measured using Delphi method and the Lawshe content validity ratio (CVR) was obtained. In the pilot test, we measured stability (test-retest), inter judge harmony and application time in 14 chronic advanced patients (CAP). The test was applied to this same group, calculating the sample according to Nunally's recommendation. RESULTS: A sample of 118 CAP was obtained. The CVR was 0.75 and the average testing time was 6.7 min (SD = 4.01). The test-retest obtained a Kappa test concordance index between 0.632 and 1.0; and the interjudge harmony agreement between 0.192 and 0.692. The surprise question (PS) was positive in 20.3% of the sample. The main conditions associated with the disease-specific severity item, were fragility (23.7%), chronic heart disease (21.2%) and chronic lung disease (12.7%). The demand group and specific severity indicators obtained a greater predictive capacity of PS+, with an area under the curve of 0.808 (95% CI: 0.697-0.918). CONCLUSIONS: NECPAL is feasible to be used in Chile, has adequate psychometric properties and will allow early detection of patients in need of palliative care.
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Cuidados Paliativos , Chile , Doença Crônica , Humanos , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosAssuntos
Neoplasias , Humanos , Chile/epidemiologia , Estudos Retrospectivos , Neoplasias/mortalidade , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Adulto , Idoso de 80 Anos ou maisRESUMO
OBJECTIVE: To explore opioid prescribing patterns for cancer pain in Latin America (LA). METHODS: A systematic review was conducted adhering to Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Relevant databases, including MEDLINE, EMBASE, PubMed, LILACS and Scielo, were searched from inception to June 2023. Empirical studies of opioid prescription patterns in adult palliative care patients with cancer pain were included. Methodological quality was assessed using the Effective Public Health Practice Project tool. Data were analysed using narrative synthesis. Descriptive statistical analyses were conducted using SPSS V.28 (IBM). Categorical variables were summarised using frequencies and percentages and continuous variables as means or medians. RESULTS: Seventeen studies from six countries were included. Ten were observational, while seven were experimental, including five randomised controlled trials (RCT) and two non-RCT. Most were low or moderate methodological quality. Out of 7809 patients, morphine (54%) and tramadol (18%) were the most prescribed opioids. The median of morphine equivalent daily dose was 26 mg (IQR 26-41). CONCLUSION: Latin America shows lower opioid consumption rates compared with high-income countries for control pain management (CPM). More rigorous research on CPM in LA is needed. Additionally, a comprehensive review of opioid prescription patterns, including non-cancer diagnoses, is necessary.
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OBJECTIVE: To develop a proposal for a 2-year mortality prognostic approach for patients with advanced chronic conditions based on the palliative care need (PCN) items of the NECesidades PALiativas (NECPAL) CCOMS-ICO V.3.1 2017 tool. METHODS: A phase 1 study using three components based on the NECPAL items: (1) a rapid review of systematic reviews (SRs) on prognostic factors of mortality in patients with advanced chronic diseases and PCNs; (2) a clinician and statistician experts' consensus based on the Delphi technique on the selection of mortality prognostic factors; and (3) a panel meeting to discuss the findings of components (1) and (2). RESULTS: Twenty SRs were included in a rapid review, and 50% were considered of moderate quality. Despite methodological issues, nutritional and functional decline, severe and refractory dyspnoea, multimorbidity, use of resources and specific disease indicators were found to be potentially prognostic variables for mortality across four clinical groups and end-of-life (EoL) trajectories: cancer, dementia and neurologic diseases, chronic organ failure and frailty. Experts' consensus added 'needs' identified by health professionals. However, clinicians were less able to discriminate which NECPAL items were more reliable for a 'general' model. A retrospective cohort study was designed to evaluate this proposal in phase 2. CONCLUSIONS: We identified several parameters with prognostic value and linked them to the tool's utility to timely identify PCNs of patients with advanced chronic conditions in all settings of care. Initial results show this is a clinical and feasible tool, that will help with clinical pragmatic decision-making and to define services.
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Cuidados Paliativos , Doença Crônica , Consenso , Humanos , Cuidados Paliativos/métodos , Estudos Retrospectivos , Revisões Sistemáticas como AssuntoRESUMO
OBJECTIVE: To develop and validate a prognostic model to assess mortality risk at 24 months in patients with advanced chronic conditions. METHODS: Retrospective design based on a previous population cohort study with 789 adults who were identified with the surprise question and NECPAL tool from primary and intermediate care centres, nursing homes and one acute hospital of Spain. A Cox regression model was used to derive a mortality predictive model based on patients' age and six previously selected NECPAL prognostic factors (palliative care need identified by healthcare professionals, functional decline, nutritional decline, multimorbidity, use of resources, disease-specific criteria of severity/progression). Patients were split into derivation/validation cohorts, and four steps were followed: descriptive analysis, predictors' assessment, model estimation and model assessment. RESULTS: All predictive variables were independently associated with increased risk of mortality at 24 months. Performance model including age was good; discrimination power by area under the curve (AUC) was 0.72/0.67 in the derivation/validation cohorts, and correlation between expected and observed (E/O) mortality ratio was 0.74/0.70. The model showed similar performance across settings (AUC 0.65-0.74, E/O 1.00-1.01), the best performance in oncological patients (AUC 0.78, E/O 0.76) and the worst in dementia patients (AUC 0.58, E/O 0.85). Based on the number of factors affected, three prognostic stages with significant differences and a median survival of 38, 17.2 and 3.6 months (p<0.001) were defined. CONCLUSION: The NECPAL prognostic tool is accurate and eventually useful at the clinical practice. Stratification in risk groups may enable early intervention and enhance policy-making and service planning.
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INTRODUCTION: Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries. METHODS: Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000-October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability. RESULTS: 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors. CONCLUSION: Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care. PROSPERO REGISTRATION NUMBER: CRD42020150252.
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Qualidade de Vida , Assistência Terminal , Idoso , Humanos , Cuidados Paliativos , Aceitação pelo Paciente de Cuidados de SaúdeRESUMO
OBJECTIVE: To assess the impact after 20 years of a Master's degree in palliative care (MsPC) on the participants' educational outcomes in terms of educational needs satisfaction, motivation, applicability and professional development (PD) in the palliative care (PC) field. METHODS: A cross-sectional study was conducted between October 2016 and February 2017. Participants were students of the MsPC from 13 editions. An ad hoc survey comprising closed-end questions was provided. Variables such as sociodemographic and learning outcomes, based on Kirkpatrick's model, were included. RESULTS: Respondents were 76.6% women, and 60% were between 30 and 50 years of age. Over half of participants were physicians (57.4%), with >15 years of experience (52%). 77% (n=152) reported previous work experience (PWE) in PC, and 23% (n=45) had no PWE. After completing the MsPC, 49% of those without PWE were hired to work in a PC unit, while 84,2% with PWE continued work in a PC-related position. 51.6% professionals with PWE were currently working in other PC areas, such as training or research. High scores were observed on expectations, training needs, motivation in professional practice, PD, applicability and satisfaction, in both groups. Data have shown statistically significant differences on the perceived value of the MsPC to obtain work in the PC field (p=0.006). CONCLUSIONS: This MsPC training programme improves educational outcomes, and promotes PD, regardless of PWE in PC. Interdisciplinary training for all professionals who care for PC individuals is required. To ensure the quality of education in PC programmes, a systematic process of continuous evaluation is needed.
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CONTEXT: Symptom management is a priority area within palliative care core competencies for generalist providers. Although several educational initiatives exist, a comprehensive evidence synthesis on the effectiveness of symptom management training on trainees' learning and patient-reported outcomes is lacking. OBJECTIVES: The objective of this study was to determine the effectiveness of training in symptom management in palliative care providers in nonpalliative specialties. METHODS: This is a systematic review following Best Evidence Medical Education methods from searches of MEDLINE, EMBASE, ERIC, CINAHL, PsycINFO, Cochrane database of systematic, Clinical Trials.gov, and ISRCTN databases to September 2017. Prospective controlled studies testing the impact of symptom management educational interventions on physicians in training in nonpalliative specialties were included. Data were summarized narratively, grouped by curriculum description, and effectiveness on trainees' learning or patient-reported outcomes. RESULTS: Of 5062 records identified, six studies met the inclusion criteria: two randomized controlled trials and four quasi-experimental. Pain management and use of opioids and their side effects were most frequently covered. Clinical decision support tools, Web-based teaching, palliative care rotation, and mixed educational methods were used. Most studies used self-reported, original, or modified evaluation instruments, although psychometric properties were seldom reported. Despite methodological considerations, all educational methods improved trainees' learning outcomes. However, the effects on trainees' behavior and patient-related outcomes were not evaluated. CONCLUSION: Current educational training programs in symptom management appear to improve trainees' comfort, preparedness, and knowledge in assessing and managing patients' symptoms at the end of life. More rigorous research to evaluate the impact of this training on residents and organizational performance is now required.