ITV-Pal programme: protocol of evaluation of the implementation of tech-volunteer programme in palliative care services.

INTRODUCTION: Volunteer support for patients and families at the end of life provides many benefits for the beneficiaries. New technologies could be a necessary resource in the accompaniment although, if there is little literature on palliative care volunteering in general, specifically on volunteering and new technologies, we find little information on the subject.Therefore, the aim of this study is to implement and evaluate a training program for palliative care volunteers using new technologies in order to begin accompanying patients and families in hospital or at home. METHODS AND ANALYSIS: A mixed-method study design will be conducted. We will recruit 20 volunteers and 70 patients in two years. INTERVENTION: training of volunteers in new technologies and volunteer accompaniment of patients/relatives using technologies. The control group will accompany patients as usual. ETHICS AND DISSEMINATION: Ethics approval for the ITV-Pal Programme project was granted by the Malaga Regional Research Ethics Committee. As new knowledge is gained from this project, findings will be disseminated through publications, presentations and feedback to clinicians who are participating in this study. TRIAL REGISTRATION NUMBER: NCT04900103.

Palliative care knowledge test for nurses and physicians: validation and cross-cultural adaptation.

BACKGROUND: Palliative care knowledge is essential in primary healthcare due to the increasing number of patients who require attention in the final stage of their life. Health professionals (physicians and nurses) need to acquire specific knowledge and abilities to provide high-quality palliative care. The development of education programmes in palliative care is necessary. The Palliative Care Knowledge Test (PCKT) is a questionnaire that evaluates the basic knowledge about palliative care, but it has not been adapted into Spanish, and its effectiveness and utility for Spanish culture have not been analysed. OBJECTIVE: The aim of this study was to report the translation into Spanish and a psychometric analysis of the PCKT. METHODS: The questionnaire survey was validated with a group of 561 physicians and nurses. The PCKT Spanish Version (PCKT-SV) was obtained from a process, including translation, back translation and revision by experts and a pilot study. The content validity and reliability of the questionnaire were analysed. RESULTS: The results showed internal consistency and reliability indexes similar to those obtained by the original version of PCKT. CONCLUSION: The PCKT-SV is a useful instrument for measuring Spanish-speaking physician and nurse knowledge of palliative care, and it is suitable to evaluate the effectiveness of training activities in palliative care.

Psychometric Testing of the Spanish Modified Version of the Mini-Suffering State Examination.

BACKGROUND: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. METHOD: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. RESULTS: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = -0.64). CONCLUSION: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.

The Quality of Dying and Death of Advanced Cancer Patients in Palliative Care and Its Association With Place of Death and Quality of Care.

The quality of dying and death is currently considered an objective to achieve at the end of life. The aim of this study is to analyze the quality of dying and death of advanced cancer patients in palliative care and its association with place of death and quality of care from the perspective of family caregivers. This is a cross-sectional study. The study sample included 72 family caregivers of advanced cancer patients in palliative care. For the evaluation of the quality of dying and death, the Spanish version of the Quality of Dying and Death Questionnaire was used. Quality of care was evaluated with the Palliative Care Outcome Scale. The mean (SD) total score on the Spanish version of the Quality of Dying and Death Questionnaire was 64.56 (20.97). The quality of dying and death was higher when the patients died at home, 70.45 (19.70), and it was positively correlated with quality of care (r = 0.61). Palliative care contributes to achieving a satisfactory quality of dying and death in Spanish advanced cancer patients. Further studies that evaluate interventions for improving the quality of dying and death in the advanced cancer population are needed.

The suffering measurement instruments in palliative care: A systematic review of psychometric properties.

BACKGROUND: The relief of suffering is considered one of the main goals to reach at the end of life, and nurses play an essential role in the prevention and relief of suffering. Validated instruments for assessing suffering can be useful, and selection of the most appropriate measure is crucial. To date, no systematic review has been performed that contrasts the measurement properties of instruments assessing suffering in the palliative care population, according to the most up-to-date COnsensus-based Standards for the selection of health status Measurement INstruments methodology. OBJECTIVES: The aim of this systematic review is twofold: (1) identify the measures assessing suffering in the palliative care population, and (2) assess the measurement properties of these measures. DESIGN: A systematic review of the measurement properties of instruments assessing suffering in palliative care was carried out. DATA SOURCES: The search strategy was conducted in Medline, CINAHL, PsycINFO, Web of Science, Cochrane Library, SciELO, Scopus, Cosmin database of systematic reviews and Open gray. REVIEW METHODS: The following methodologies were applied: updated COnsensus-based Standards for the selection of health status Measurement INstruments, the Meta-Analysis of Observational Studies in Epidemiology, and the Assessing the Methodological Quality of Systematic Reviews tool. A protocol for this systematic review was registered in PROSPERO (Registration number: CRD42018106488). Eligible studies were those that satisfied the following criteria: a) validation studies of measures assessing suffering in the palliative care population, b) assessing at least one measurement property of a measure, c) published in English or Spanish and d) published between January 1980 and September 2019. The included studies were assessed for the methodological quality of the measurement properties and then compared in terms of both the measurement properties and the methodological quality of the processes used. The evidence for each measurement property was summarised and the quality of the evidence was graded using the Grading of Recommendations, Assessment, Development and Evaluation approach. RESULTS: The search strategy yielded a total of nine studies and six instruments assessing suffering. The methodological quality of the studies was doubtful and the quality of the evidence was moderate for most of the measurement properties analysed. The Suffering Pictogram was the instrument with the best rating for methodological quality and quality of evidence, for most of the measurement properties evaluated. CONCLUSIONS: Instruments assessing suffering in palliative care have been identified in this systematic review. The Suffering Pictogram seems to be the most useful instrument identified. Tweetable abstract: The relief of suffering is one of the main goals to reach at the end of life, and the selection of the most appropriate measure for assessing this construct is crucial.

Level of Palliative Care Complexity in Advanced Cancer Patients: A Multinomial Logistic Analysis.

The current treatment approach for patients in palliative care (PC) requires a health model based on shared and individualised care, according to the degree of complexity encountered. The aims of this study were to describe the levels of complexity that may be present, to determine their most prevalent elements and to identify factors that may be related to palliative complexity in advanced-stage cancer patients. An observational retrospective study was performed of patients attended to at the Cudeca Hospice. Socio-demographic and clinical data were compiled, together with information on the patients' functional and performance status (according to the Palliative Performance Scale (PPS)). The level of complexity was determined by the Diagnostic Instrument of Complexity in Palliative Care (IDC-Pal©) and classified as highly complex, complex or non-complex. The impact of the independent variables on PC complexity was assessed by multinomial logistic regression analysis. Of the 501 patients studied, 44.8% presented a situation classed as highly complex and another 44% were considered complex. The highly complex items most frequently observed were the absence or insufficiency of family support and/or caregivers (24.3%) and the presence of difficult-to-control symptoms (17.3%). The complex item most frequently observed was an abrupt change in the level of functional autonomy (47.6%). The main factor related to the presence of high vs. non-complexity was that of performance status (odds ratio (OR) = 10.68, 95% confidence interval (CI) = 2.81-40.52, for PPS values < 40%). However, age was inversely related to high complexity. This study confirms the high level of complexity present in patients referred to a PC centre. Determining the factors related to this complexity could help physicians identify situations calling for timely referral for specialised PC, such as a low PPS score.

Suffering measurement instruments in palliative care: protocol for a systematic psychometric review.

INTRODUCTION: The prevention and relief of suffering are regarded as a goal at the end of life; therefore, suffering assessment at the end of life is essential. In this regard, we need instruments that allow us to evaluate this construct for gathering more evidence, as the assessment of suffering is increasingly used in research and the clinical setting. Many measures have been designed to assess this construct, and the selection of the most appropriate instrument is crucial. The aims of this systematic review are to (1) identify the measures assessing suffering in patients with advanced disease and their psychometric properties and (2) evaluate the methodological quality of studies on measurement properties. METHODS AND ANALYSIS: The protocol of this systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols Guidelines. A systematic psychometric review of measures assessing suffering in patients with advanced disease and their psychometric properties will be carried out according to the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN). The search strategy will be performed following the Peer Review of Electronic Search Strategies. Searches will be conducted in Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, Cochrane Library, SciELO, Open Grey, Scopus, Web of Science and COSMIN database of systematic reviews, and it will be limited by time (1980-2018) and language (only literature in English and Spanish). Literature will be evaluated by two independent reviewers according to the COSMIN checklist, and measurement properties data of each study that meet the inclusion criteria will be scored independently by two researchers according to COSMIN quality ratings. ETHICS AND DISSEMINATION: Ethical approval is not necessary for systematic review protocols. The results will be disseminated by publication in a peer-reviewed journal and presented at a relevant conference. PROSPERO REGISTRATION NUMBER: CRD42018106488.

Prevalencia y evaluación de síntomas en enfermedad renal crónica avanzada / Prevalence and evaluation of symptoms in advanced chronic kidney disease

El paciente con enfermedad renal crónica avanzada (ERCA) presenta una elevada carga de síntomas que contribuyen a un aumento del sufrimiento y disminuyen su calidad de vida. El uso de instrumentos de evaluación es esencial para el control de síntomas. El objetivo de esta revisión es obtener una visión contrastada de los instrumentos más usados para evaluar síntomas en ERCA, realizando una descripción de la prevalencia de síntomas en esta población. Método: Se realizó una revisión de la literatura publicada sobre estudios en los que se utilizara algún instrumento para medir la intensidad de varios síntomas en pacientes con ERCA. La búsqueda se realizó en Pubmed, Cochrane, SciELO, TESEO, PROQOLID y BiblioPRO. Los criterios de inclusión fueron: estudios realizados con pacientes en ERCA, que evaluaran la sintomatología con algún instrumento de medición de síntomas, y que además, indicaran la prevalencia de varios síntomas. Resultados: Los instrumentos identificados fueron el Memorial Symptom Assessment Scale Short Form(MSAS-SF), el Dialysis Symptom Index (DSI), el Edmonton Symptom Assessment System (ESAS) y el Palliative care Outcome Scale-Symptoms Renal (POS-S RENAL). En pacientes adultos con ERCA sometidos a tratamiento renal sustitutivo con hemodiálisis y diálisis peritoneal, los síntomas más prevalentes fueron el cansancio, prurito, estreñimiento, anorexia, dolor, alteraciones del sueño, ansiedad, disnea, nauseas, piernas inquietas, y depresión. Éstos síntomas fueron similares en pacientes con manejo renal conservador, y presentaron un patrón común con la sintomatología de otras enfermedades avanzadas. Concluimos que existe necesidad de investigar sobre prevalencia y evaluación de síntomas en esta población, y que el uso sistemático de los instrumentos específicos de evaluación de síntomas como medida de resultados es fundamental (AU)

The patient with advanced chronic kidney disease (ACKD) has a high symptom burden that contribute to increased suffering and diminish their quality of life. The use of symptom assessment tools is essential for the control of symptoms. The aim of this review is to obtain a contrasted vision of the instruments commonly used to assess symptoms in ACKD, making a description of the prevalence of symptoms in this population. Method: A review of the literature on studies in which an instrument is used to measure the intensity of several symptoms in patients with ACKD was undertaken. The search was conducted in PubMed, Cochrane, SciELO and TESEO. Inclusion criteria were: studies in patients with ACKD, evaluating symptoms with an assessment tool, and also indicate the prevalence of various symptoms. Results: The instruments identified were the Memorial Symptom Assessment Scale Short Form (MSAS-SF), the Dialysis Symptom Index (DSI), the Edmonton Symptom Assessment System (ESAS) and the Palliative Care Outcome Scale-Symptoms Kidney (POS-S RENAL). In adult patients with ACKD undergoing renal replacement therapy with hemodialysis and peritoneal dialysis, the most prevalent symptoms were fatigue, pruritus, constipation, anorexia, pain, sleep disturbance, anxiety, dyspnea, nausea, restless legs, and depression. These symptoms were similar in patients with renal conservative management, and showed a common pattern to the symptoms of others advanced diseases. We conclude that we need to research about the prevalence and evaluation of symptoms in this population, and a systematic use of specific instruments for evaluating symptoms as an outcome measure is necessary (AU)

Futilidad en demencias / Futility in dementia

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