Après avoir essayé les divers outils disponibles, une maison de soins palliatifs de Québec de 15 lits souhaitait améliorer l'évaluation du risque de développer des lésions de pression, en tenant compte des recommandations d'Agrément Canada. En 2016, elle a donc développé puis implanté un formulaire combinant l'Echelle de Braden, 22 facteurs de risque identifiés lors d'une revue de littérature et l'Echelle de Performance Palliative (EPP) (traduction de Palliative Performance Scale) (Anderson, Downing, Hill, Casorso et Lerch, 1996 ; Victoria Hospice Society, 2006).
Dans un souci d'appuyer les pratiques cliniques basées sur les meilleures données scientifiques, et compte tenu de l'absence de données de validation au sujet des différentes composantes du formulaire dans le contexte des soins palliatifs, un projet de recherche a été développé afin d'évaluer la pertinence clinique de ce formulaire.
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Objective: This study was part of a comprehensive perspective, and aiming to propose a draft protocol for assessing the severity of pain in schizophrenic patients suffering from somatic pathology, to see the characteristics of non-reactive to pain.
Patients, materiel and methods: This paper reports the observation from two clinical case that took place at the Saint-Vincent-de-Paul hospital in Dschang (Cameroon). Documentary research was conducted using Google, Google Scholar, Scielo, PubMed, Medline and Interagency Pain Research Portfolio as main search engines and databases. The main keywords were schizophrenia, pain, and psychosis, psychotic, schizophrenic. A clinical experimental protocol with control cases and respect of ethical rules was used.
Result: The patients with schizophrenia also showed insensitivity/low sensitivity to pain. Control cases showed a reaction indicating that the pain was severe.
Conclusion: The present study concludes on the proposal of a triangulation device for the evaluation of pain in schizophrenic patients with somatic pathologies.
Objectif de l’étude: Un travail d’évaluation globale de la satisfaction des patients pris en charge par le réseau de soins palliatifs Ensemble a été initié entre 2014 et 2016 à travers trois études simultanées recueillant le point de vue des proches et des professionnels intervenant dans la prise en charge du patient dans une démarche d’amélioration continue de la qualité des soins. L’objectif principal de cette étude était la mise en évidence de critères de satisfaction pour lesquels des réponses significativement différentes ont été observées selon le statut du répondant aux enquêtes et qui soulignerait l’importance des regards croisés dans les études de satisfaction en soins palliatifs.
Matériel et méthode: Les taux de satisfaction pour des critères de qualités validés d’un réseau de soins palliatifs communs à deux études rétrospectives observationnelles quantitatives interrogeant les proches de patients et les professionnels de santé ont été comparés.
Résultats: Soixante-quatorze pour cent des proches et 26 % des professionnels inclus ont répondu. La comparaison des taux de satisfaction a mis en évidence des critères pour lesquels les réponses des proches et des professionnels étaient similaires et des critères plus subjectifs pour lesquels les réponses étaient significativement différentes (perception du réseau comme soutien pour l’entourage [p<0,001], vécu de choses importantes en fin de vie [p< 0,001], respect du choix du lieu de décès [p=0,007]).
Conclusion: Cette étude a mis en évidence des critères pour lesquels il semble pertinent de multiplier les points de vue dans les enquêtes de satisfaction en soins palliatifs afin d’obtenir des réponses au plus proche du vécu des patients en fin de vie.
Objectif: Étudier la relation entre la détresse et la confusion mentale chez les patients en situation palliative afin d’apporter une prise en charge adaptée à cette situation complexe et fréquente en fin de vie.
Méthodes: C’est une étude quantitative observationnelle, prospective et multicentrique réalisée auprès de patient en situation palliative. Les équipes de chaque structure incluaient les patients et réalisaient des évaluations à l’aide d’un formulaire visant à renseigner l’intensité de la détresse ressenti par le patient, à l’aide de la Distress Thermometer auto-évaluée puis hétéro-évaluée, et la présence ou non d’une confusion à l’aide de la Nu-DESC. En outre, il était rapporté la prise ou non des prescriptions médicamenteuses anticipées ainsi que toutes les caractéristiques épidémiologiques du patient.
Résultats: Nous avons pu inclure 51 patients et réaliser 467 entretiens. Aucune relation n’a été mise en évidence entre la détresse et la confusion sur tous les entretiens confondus. Par contre, une relation faible à modérée a été mise en évidence au premier entretien. La confusion a tendance à augmenter à l’approche du décès alors qu’aucune relation n’a pu être mise en évidence entre la détresse et la date du décès.
Conclusion: Ces résultats questionnent sur le ressenti des patients confus puisqu’il n’a pas été mis en évidence que la confusion engendre une détresse plus importante chez ces patients sur tous les entretiens.
Accumulating evidence suggests that a dementia diagnosis, for many, triggers feelings of grief, and often marks the first of many losses that will be experienced by both the person who has received the diagnosis and their loved ones, as the disease progresses. Previous research has also revealed that carers who report higher levels of pre-death grief are at greater risk of complicated grief after their loved one has died. Despite this evidence, appropriate bereavement support for people bereaved by dementia is a significant unmet need.
The Bereaved by Dementia project was delivered collaboratively by Cruse Cymru and Alzheimer’s Cymru to address the bereavement needs of people bereaved by dementia throughout Wales. This paper draws on an independent evaluation of the Bereaved by Dementia Project conducted by Aston University and the University of Bristol. We summarise our main findings, recommendations, and suggestions for future research.
Introduction: We sought to assess one-year mortality in heart failure (HF) patients by using (Placement Resource Indicator for Systems Management) PRISM, a disease nonspecific risk stratification score, and use it along with modified Seattle Heart Failure Model (SHFM) to guide patient selection for palliative care consultation.
Methods: A retrospective study design was used to examine 1-year mortality in 689 HF patients admitted from 2012 to 2014. One-year mortality was calculated using Pmort30/PRISM and modified SHFM scores, and the predicted scores were validated using the area under the ROC curve. CART was used to develop an algorithm to classify patients based on their mortality risk.
Results: The discriminatory ability of PRISM categorical score (AUC = 0.701) was not significantly different than the discriminatory ability of modified SHFM (AUC = 0.686) (DeLong's test p = 0.56) but improved significantly with the combination of PRISM (categorical) score + modified SHFM (AUC = 0.740) (p = 0.002). The predictive capability of the CART tree model after cross-validation was 72.2% (AUC 0.631).
Conclusion: Our study suggests PRISM score performed as well as modified SHFM for one-year mortality prediction. Moreover, the addition of modified SHFM to PRISM score increases discriminatory ability in predicting 1-year mortality in heart failure patients compared to either of the two models alone. Together, when combined in a CART model, they can be used to identify the population subset with the highest mortality risk and hence guide goals of care discussion.
CONTEXT: Medications commonly used for symptom control along with other known risk factors have the potential to prolong ventricular repolarization as measured by the QT interval on a standard ECG.
OBJECTIVES: To document the prevalence of a prolonged QTc interval in the palliative/oncology setting, compare automatic ECG QTc measurements with manual readings and identify any correlation between QTc prolongation and the use of drugs or other risk factors.
METHODS: A convenience sample of consecutive patients with cancer, admitted under or known to the palliative/supportive care teams in two metropolitan hospitals and willing to provide an ECG recording and basic demographic information including QTc risk factors were included. Both automated and manually calculated QTc intervals were recorded. Multivariable analysis was used to determine risk factors independently associated with prolonged QTc intervals.
RESULTS: Of the 389 participants, there was a significant difference in mean QTc between sites using automated but not manual calculations. Manual readings were therefore used with predetermined cut-offs of 0.44sec (males) and 0.46sec (females). 72 (18.5%) of participants had a prolonged QTc with 6 (1.5%) having a prolongation >0.50sec. "At-risk" drugs were being taken by 218 participants (56.0% of total cohort). Factors shown to be associated with QTc prolongation included age, gender, performance status and hypocalcaemia. No specific medication was associated with increased risk.
CONCLUSION: Although almost 20% of patients receiving palliative care had prolongation of QTc, the risk of serious consequences appeared to be low despite the frequent occurrence of risk factors.
Aim: To evaluate person-centeredness in nursing homes from the perspective of frail older persons, before and after implementing an educational intervention about palliative care.
Design: A crossover design.
Methods: Forty-four older persons living in nursing homes were interviewed. A convergent mixed-method was used to analyse data.
Results: The older persons expressed feelings of unsafety related to shortcomings in staff. These shortcomings implied that the responsibilities of everyday activities and making the residents' existence more bearable were transferred to the next of kin. The dropout rate related to death and not enough energy was considerably high (51%) even though one of the inclusion criteria was to have enough energy to manage a 1-hr interview. This result supports previous research describing the difficulties in retaining older persons in research and indicated that the dose of the intervention was not sufficient to improve person-centred care.
Background: Symptoms (e.g., pain, shortness of breath, and fatigue) at the end of life (EoL) are common. Although symptoms can contribute to poor quality of life at the EoL, much remains unknown regarding their prevalence and correlates in home hospice care.
Objectives: To determine the prevalence and correlates of caregiver-reported symptoms in home hospice patients during the last week before discharge using the Edmonton Symptom Assessment Scale (ESAS).
Design: This is a cross-sectional study measuring perceived patient symptoms using caregiver proxy data. Bivariate and multivariate analyses were conducted to examine patient and caregiver characteristics associated with ESAS scores.
Setting/Subjects: Subjects were from an urban nonprofit home hospice organization.
Measurements: Symptoms were measured using the ESAS.
Results: The mean ESAS score was 51.2 (SD ±17.4). In bivariate analyses, higher perceived symptom score was associated with younger patient age (p < 0.001), younger caregiver age (p < 0.001), having a cancer diagnosis (p = 0.006), and lower caregiver comfort level managing symptoms (p < 0.001). Regression model analyses showed that younger patient age (p = 0.0009, p = 0.0036) and lower caregiver comfort level managing symptoms (p = 0.0047, p < 0.0001) were associated uniquely with higher symptom scores.
Conclusions: Multiple symptoms of high severity were perceived by caregivers in the last week on home hospice. Patient age and caregiver comfort level in managing symptoms were associated with higher symptom scores. Further work is needed to improve management and treatment of symptoms in this care setting.
The mark of a true profession is the ability to self-regulate. As such, advanced practice registered nurses (APRNs) are challenged by their professional organisations to participate in self-evaluation and peer review. Peer review is a method for evaluating the care provided by the APRN to both ensure quality nursing care and promote professional growth. Despite guidelines to participate in a formal peer-review process, there is little information within the nursing profession on how to accomplish peer review. A comprehensive literature review failed to provide a framework for peer review that is practice focused, fosters a learning environment and encompasses the thought process and clinical decision-making of the palliative care advanced practice nurse. A group of palliative care APRNs set out to create a process that encompassed the breadth of clinical decision-making in palliative care advanced nursing practice. Using the eight domains of palliative care, a narrative case review structure was created. The resulting process both assisted the APRNs in professional growth and provided timely feedback for the annual performance evaluation.
Background: Precision health initiatives for end-of-life planning require robust methods for identifying patient risk for decline and mortality. The Outcome and Assessment Information Set (OASIS) surprise question (SQ; M1034 Overall Status) is the primary tool for evaluating risks in homebound older adults. However, the OASIS-D, Released in 2019, eliminates this question. This study examines the prognostic ability of 12- and 24-month mortality risk reflected in the OASIS-SQ and develops an alternative approach for classifying mortality risk to support decision-making in the absence of the OASIS-SQ.
Design: Retrospective secondary data analysis.
Setting/Participants: A nationally representative sample of 69 097 OASIS-C assessments (2012) linked to the Master Beneficiary Summary file (2012 and 2013).
Measurements: Survival analysis, k-means clustering, and Cohen coefficient with Z test.
Results: The OASIS-SQ predicts mortality (35% at 12 and 45% at 24 months; P < .001). Cluster analysis identified 2 risk groups: OASIS activity of daily living “ADL total scores” >15 = (lower risk) and =15 = (higher risk) for 24-month mortality. Model agreement is weak for both cluster 1 and cluster 2, the OASIS-SQ = 0.20, 95% confidence interval (CI) = .19 to .21, and “alive/not alive” = .17, 95% CI = .16 to .18.
Conclusion: The OASIS-SQ and “ADL total score” are almost equally likely to predict 24-month mortality; therefore, it was reasonable to use the “ADL total score” as a substitute for the OASIS-SQ. Removal of the OASIS-SQ leaves home care providers with few clear options for risk screening resulting in missed opportunities to refer to palliative or hospice services.
BACKGROUND: Palliative care aims to improve quality of life by relieving physical, emotional, and spiritual suffering. Health system planning can be informed by evaluating cost and effectiveness of health care delivery, including palliative care.
AIM: The objectives of this article were to describe and critically appraise economic evaluations of palliative care models and to identify cost-effective models in improving patient-centered outcomes.
DESIGN: We conducted a systematic review and registered our protocol in PROSPERO (CRD42016053973).
DATA SOURCES: A systematic search of nine medical and economic databases was conducted and extended with reference scanning and gray literature. Methodological quality was assessed using the Drummond checklist.
RESULTS: We identified 12,632 articles and 5 were included. We included two modeling studies from the United States and England, and three economic evaluations from England, Australia, and Italy. Two studies compared home-based palliative care models to usual care, and one compared home-based palliative care to no care. Effectiveness outcomes included hospital readmission prevented, days at home, and palliative care symptom severity. All studies concluded that palliative care was cost-effective compared to usual care. The methodological quality was good overall, but three out of five studies were based on small sample sizes.
CONCLUSION: Applicability and generalizability of evidence is uncertain due to small sample sizes, short duration, and limited modeling of costs and effects. Further economic evaluations with larger sample sizes are needed, inclusive of the diversity and complexity of palliative care populations and using patient-centered outcomes.
AIMS AND OBJECTIVES: To examine the content and reported psychometric properties of instruments for assessing nurses´ palliative care knowledge and skills in specialised healthcare units.
BACKGROUND: Knowledge of palliative care, and competence in the delivery of care, are essential. Assessment of competence is an important means of evaluating the knowledge and skills of practitioners in order to improve the quality of care provided for patients and their families.
DESIGN: An integrative review.
METHODS: A systematic literature search was conducted in November 2018 in five databases: CINAHL, PubMed (Medline), Cochrane, Scopus and Web of Science. The quality assessment was conducted using the Joanna Briggs Institute´s (JBI) Checklist for Analytical Cross-Sectional Studies. The data was analysed using content analysis. PRISMA guidelines were followed to ensure explicit reporting.
RESULTS: Overall, 5,413 studies were identified and 23 met the inclusion criteria. Nurses' knowledge and skills, as assessed by the instruments, were: 1) care for the patient, 2) care for the patient´s family and 3) professional requirements. Ten instruments were identified assessing nurses' knowledge and skills through knowledge tests and skill-evaluation self-tests. The psychometric properties of the instruments were reported to varying degrees, mainly focusing on internal consistency and content validation.
CONCLUSIONS: Nurses´ knowledge and skills were seen to contribute to the holistic care of the patient and his or her family, and the possession of adequate information and skills is essential when dealing with death and dying. The instruments are commonly available and potentially reliable, although reliability must be determined with caution, so validation studies in other cultures are recommended.
RELEVANCE TO CLINICAL PRACTICE: These results could be utilised to improve the quality of palliative care by evaluating the knowledge and skills of nursing staff, or when considering the needs of palliative care education.
BACKGROUND: Telehealth is growing and its application in palliative care is seen as a solution to pressures on palliative care services. A 2010 UK review reported growing awareness of telehealth in palliative care but a lack of evidence-based research to support its use. The primary aim of this review was to describe the current use of telehealth in palliative care in the UK and evaluate telehealth initiatives against a digital service standard. The secondary aim was to explore whether telehealth results in a reduction in emergency care access.
METHODS: Systematic review of the literature with thematic synthesis. Records were screened and data extracted by two reviewers. EMBASE, MEDLINE, CINAHL, Psychinfo and Cochrane central register for controlled trials were searched using pre-defined terms. Hand searching of conference literature, thesis databases and citation tracking was also conducted. The protocol for this systematic review was registered with PROSPERO and can be found at http://www.crd.york.ac.uk/PROSPERO/display_record.php?ID=CRD42017080038.
RESULTS: The search identified 3807 titles and 30 studies were included in the review. Telehealth was used to support patients and carers, electronic record keeping and professional education. Notably, the number of home telemonitoring initiatives for patients had increased from the 2010 review. Despite this variety, many studies were small scale, descriptive and provided little evidence of evaluation of the service. Ten papers were sufficiently detailed to allow appraisal against the digital service standard and only one of these met all of the criteria to some extent. Seven studies made reference to emergency care access.
CONCLUSIONS: Although there is growth of telehealth services, there remains a lack of evaluation and robust study design meaning conclusions regarding the clinical application of telehealth in palliative care cannot be drawn. There is insufficient evidence to appreciate any benefit of telehealth on access to emergency care. Future work is needed to evaluate the use of telehealth in palliative care and improve telehealth design in line with digital service standards.
Introduction: Quality medical education, centered on a patient's needs, is crucial to develop the health professionals that our society requires. Research suggests a strong contribution of palliative care education to professionalism. The aim of this study was to design and validate a self-report inventory to measure student's professional development.
Method: Sequential exploratory strategy mixed method. The inventory is built based on the themes that emerged from the analysis of four qualitative studies about nursing and medical students' perceptions related to palliative care teaching interventions (see Ballesteros et al. 2014, Centeno et al. 2014 and 2017, Rojí et al. 2017). The structure and psychometrics of the inventory obtained is tested in two different surveys with two different groups of medical students. Inventory reliability and construct validity are tested in the first survey group. To verify the inventory structure, a confirmatory factor analysis is performed in a second survey group.
Results: The inventory has 33 items and seven dimensions: a holistic approach, caring for and understanding the patient, personal growth, teamwork, decision-making, patient evaluation, and being a health care professional. Cronbach's-alpha was 0.73-0.84 in all seven domains, ICC: 0.95. The confirmatory factor analysis comparative fit index (CFI) was 1 with a standardized root mean square Index 0.088 (SRMR) and obtained a 0.99 goodness-of-fit R-square coefficient.
Conclusions: this new inventory is grounded on student's palliative care teaching experiences and seems to be valid to assess student's professional development.
Background: Malignant Ascites (MA) is a therapeutic dilemma significantly impairing patients’ quality of life (QoL). The Sequana Medical alfapump System (AP), a subcutaneous, externally rechargeable, implantable device, continually draining ascites via the urinary bladder, has been well established in liver cirrhosis, but not yet in MA. The AP-system was evaluated in cancer patients in reducing the need for large volume paracentesis (LVP).
Methods: A retrospective multicentre evaluation of all eligible patients who received an AP for MA-palliation was performed. AP was evaluated for its ability to reduce LVP and cross-correlated with adverse events (AE), survival and retrospective physician-reported QoL.
Results: Seventeen patients with median age of 63 years (range: 18–81), 70.6% female, across 7 primary tumour types were analysed. Median duration of AP-implantation was 60 min (range: 30–270) and median post-implantation hospital stay: 4 days (range: 2–24). Twelve protocol-defined AE occurred in 5 patients (29.4%): 4 kidney failures, 4 pump/catheter-related blockages, 3 infections/peritonitis and 1 wound dehiscence. Median ascitic volume (AV) pumped daily was 303.6 ml/day (range:5.6–989.3) and median total AV drained was 28 L (range: 1–638.6). Median patient post-AP-survival was 111 days (range:10–715) and median pump survival was 89 days (range: 0–715). Median number of paracenteses was 4 (range: 1–15) per patient pre-implant versus 1 (range: 0–1) post-implant (p = 0.005). 71% of patients were reported to have an improvement of at least one physician reported QoL-parameters.
Conclusions: AP appears to be effective in palliating patients with MA by an acceptable morbidity profile. Its broader implementation in oncology services should be further explored.
Background: There is considerable interest in the use of cannabinoids for symptom control in palliative care, but there is little high-quality evidence to guide clinical practice.
Objectives: Assess the feasibility of using global symptom burden measures to assess response to medicinal cannabis, to determine median tolerated doses of cannabidiol (CBD) and tetrahydrocannabinol (THC), and to document adverse events (AEs).
Design: Prospective two-arm open-label pilot trial of escalating doses of CBD and THC oil.
Setting/Subjects: Participants had advanced cancer and cancer-related symptoms in a palliative and supportive care service in an Australian cancer center.
Measurements: The main outcome measures were the number of participants screened and randomized over the time frame, the number of participants completing days 14 and 28 and providing total symptom distress scores (TSDSs) (measured using the Edmonton Symptom Assessment Scale), and the change from baseline of the TSDS at day 14.
Results: Of the 21 participants enrolled (CBD, n = 16; THC, n = 5), 18 (86%) completed the primary outcome measure at day 14 and 8 completed at day 28. The median maximum tolerated doses were CBD, 300 mg/day (range 100–600 mg); THC, 10 mg/day (range 5–30 mg). Nine of 21 patients (43%) met the definition of response (=6 point reduction in TSDS). Drowsiness was the most common AE.
Conclusions: Trials of medicinal cannabis in advanced cancer patients undergoing palliative care are feasible. The doses of THC and CBD used in this study were generally well tolerated and the outcome measure of total symptom distress is promising as a measure of overall symptom benefit. Trial registration: ACTRN12618001205224.
Background: Difficulty sleeping is a common symptom for patients living with cancer that significantly affects their lives. However, although sleep disorders are common, it is an overlooked problem in cancer care.
Purpose: This study assessed the prevalence of sleep disturbances among patients living with cancer, and assessed the adequacy of sleep assessment and intervention for patients from both nurses' and patients' perspectives.
Method: Descriptive, cross-sectional and correlational design was used in this study. A convenience sample of 129 patients with cancer and 113 registered nurses working with cancer patients was recruited. A structured face-to-face interview was used to complete the patients' questionnaires and a self-administered questionnaire was given to nurses.
Findings: The majority of patients with cancer reported having poor sleep quality (69.8%). About 86.7% (n=98) of nurses reported that they have never screened patients with cancer for any sleep problems, and 76.7% (n=99) of the patients reported that they have never been assessed for sleep problems by the nursing staff during hospitalisation. Only 8% of patients with cancer who reported having problems sleeping to a nurse received interventions to promote better sleep.
Conclusion: Assessment of sleep disturbances in patients with cancer should be unified using a comprehensive reliable valid instrument, as well as providing evidence-based interventions according to patient's need. A written policy should be introduced to encourage sleep documentation and to make sleep care for patients part of routine nursing care.
Background: Patients with advanced chronic obstructive pulmonary disease have difficulty reporting their holistic support needs to health care professionals, undermining delivery of person-centred care. We lack tools that directly support patients with this.
Aim: To develop an evidence-based, designed-for-purpose, tool to enable patients to directly identify and express support needs to health care professionals.
Design: Two-stage qualitative study. Stage 1: domains of support need were identified through a systematic review, analysis of an established qualitative dataset and patient/carer focus groups. Stage 2: draft tool developed using the identified domains of need and then refined through feedback from patients, carers and health care professionals, ensuring acceptability and suitability.
Setting/participants: Stage 1 patients/carers recruited via four primary care practices and two patient support groups (East of England). Stage 2 health care professionals recruited via the Clinical Research Network and local community trust and patients/carers through two further practices and two additional support groups (East of England). In total, 57 patients, carers and health care professionals participated.
Results: A comprehensive set of evidence-based support domains (for example: overcoming boredom or loneliness, knowing what to expect in the future) was identified and formulated into questions. The resulting tool asks patients to consider whether they need more support in 15 broad areas. Patients, carers and clinical stakeholders broadly endorsed the tool’s content and wording.
Conclusion: The Support Needs Approach for Patients (SNAP) tool is a concise evidence-based tool designed to help patients with advanced chronic obstructive pulmonary disease identify and express their support needs to enable delivery of person-centred care.
Palliative care has long recognized the importance of treating the whole person to address a patient's physical, mental, and spiritual suffering. To address psychological suffering, palliative care often draws upon the pharmacotherapy and psychotherapy offered by psychiatry. Several new developments have occurred in the past decade within psychiatry that impact palliative care. For example, the recent updating of the Diagnostic and Stastistical Manual of Mental Disorders has led to renewed discussions on how to best distinguish grief from depression or recognize that both may be present at the same time. In this article, we draw upon a team of psychiatric, palliative care, and dual-trained physicians to highlight the “Top 10” tips from psychiatry to provide relief for patients with chronic disease or at the end of life.