L’infermiere e la percezione del Moral Distress nella cura del fine vita nel paziente dializzato

The phenomenon of Moral Distress in nursing practice is described as a situation of suffering that arises when the nurse recognizes the ethically appropriate action to be taken and yet institutional impediments make it impossible for him to follow the right course of action. Dialysis patients often have a complex disease trajectory that sometimes involves professional and emotional challenges for staff, especially at the end of life. The objective of this review is to identify which strategies are useful for preserving emotional integrity and awareness in operational settings, for the benefit of both operators and patients.

Early referral to a palliative team improves end-of-life care among gynecological cancer patients: a retrospective, population-based study

ObjectiveTo assess end-of-life care among patients with gynecological cancer, and to describe the association between timing of palliative care referral and patterns of care.MethodsAll women with residence in Oslo, Norway, who died of gynecological cancer between January 1, 2015 and December 30, 2017 (36 months), were identified. Patients were primarily treated at the Norwegian Radium Hospital and clinical data on end-of-life care were retrospectively extracted from the medical records.ResultsWe identified 163 patients with median age 70.1 years at death (range 26–100) with the following diagnoses: ovarian (n=100), uterine (n=40), cervical (n=21), and vulvar cancer (n=2). 53 (33%) of patients died in a palliative care unit, 34 patients (21%) died in nursing homes without palliative care, and 48 (29%) patients died in hospital. Only 15 (9%) patients died at home. 25 (15%) patients received chemotherapy in the last 30 days before death, especially ovarian cancer patients (n=21, 21%). 103 patients (61%) were referred to a palliative team prior to death. Referral to a palliative team was associated with a significantly reduced risk of intensive care unit admission (OR 0.11, 95% CI 0.02 to 0.62) and higher likelihood of a structured end-of-life discussion (OR 2.91, 95% CI 1.03 to 8.25). Palliative care referral also seemed to be associated with other quality indicators of end-of-life care (less chemotherapy use, more home deaths).ConclusionsEnd-of-life care in patients with gynecological cancer suffers from underuse of palliative care. Chemotherapy is still commonly used towards end-of-life. Early palliative care referral in the disease trajectory may be an important step towards improved end-of-life care.

Pre-cancer and cancer-associated depression and anxiety among older adults with blood cancers in the United States

For patients with blood cancers, comorbid mental health disorders at diagnosis likely affect the entire disease trajectory, as they can interfere with disease information processing, lead to poor coping, and even cause delays in care. We aimed to characterize the prevalence of depression and anxiety in patients with blood cancers. Using the Surveillance, Epidemiology, and End Results-Medicare database, we identified patients 67 years and older diagnosed with lymphoma, myeloma, leukemia, or myelodysplastic syndromes between 2000 and 2015. We determined the prevalence of pre-cancer and cancer-associated (CA) depression and anxiety using claims data. We identified factors associated with CA-depression and CA-anxiety in multivariate analyses. Among 75,691 patients, 18.6% had at least one diagnosis of depression or anxiety. Of the total cohort, 13.7% had pre-cancer depression and/or pre-cancer anxiety, while 4.9% had CA-depression or CA-anxiety. Compared to patients without pre-cancer anxiety, those with pre-cancer anxiety were more likely to have subsequent claims for CA-depression (OR 2.98; 95% CI 2.61-3.41). Other factors associated with higher risk of CA-depression included female sex, non-married status, higher comorbidity, and myeloma diagnosis. Patients with pre-cancer depression were significantly more likely to have subsequent claims for CA-anxiety compared to patients without pre-cancer depression (OR 3.01; 95% CI 2.63-3.44). Female sex and myeloma diagnosis were also associated with CA-anxiety. In this large cohort of older patients with newly diagnosed blood cancers, almost one in five suffered from depression or anxiety, highlighting a critical need for systematic mental health screening and management for this population.

Fusion of Imaging and Non-Imaging Data for Disease Trajectory Prediction for COVID-19 Patients

ABSTRCATPurposeThis study investigates whether graph-based fusion of imaging data with non-imaging EHR data can improve the prediction of disease trajectory for COVID-19 patients, beyond the prediction performance of only imaging or non-imaging EHR data.Materials and MethodsWe present a novel graph-based framework for fine-grained clinical outcome prediction (discharge, ICU admission, or death) that fuses imaging and non-imaging information using a similarity-based graph structure. Node features are represented by image embedding and edges are encoded with clinical or demographic similarity.ResultsOur experiments on data collected from Emory Healthcare network indicate that our fusion modeling scheme performs consistently better than predictive models using only imaging or non-imaging features, with f1-scores of 0.73, 0.77, and 0.66 for discharge from hospital, mortality, and ICU admission, respectively. External validation was performed on data collected from Mayo Clinic. Our scheme highlights known biases in the model prediction such as bias against patients with alcohol abuse history and bias based on insurance status.ConclusionThe study signifies the importance of fusion of multiple data modalities for accurate prediction of clinical trajectory. Proposed graph structure can model relationships between patients based on non-imaging EHR data and graph convolutional networks can fuse this relationship information with imaging data to effectively predict future disease trajectory more effectively than models employing only imaging or non-imaging data. Forecasting clinical events can enable intelligent resource allocation in hospitals. Our graph-based fusion modeling frameworks can be easily extended to other prediction tasks to efficiently combine imaging data with non-imaging clinical data.

Secreted ORF8 is a pathogenic cause of severe Covid-19 and potentially targetable with select NLRP3 inhibitors

ABSTRACTDespite extensive research, the specific factor associated with SARS-CoV-2 infection that mediates the life-threatening inflammatory cytokine response in patients with severe Covid-19 remains unidentified. Herein we demonstrate that the virus-encoded Open Reading Frame 8 (ORF8) protein is abundantly secreted as a glycoprotein in vitro and in patients with newly diagnosed Covid-19. ORF8 specifically binds to the NOD-like receptor family pyrin domain-containing 3 (NLRP3) in CD14+/CD16+ monocytes to induce an inflammasomal cytokine response. The levels of ORF8 protein in the blood correlate with disease mortality in patients with acute infection, and the disease trajectory in patients with severe Covid-19. Furthermore, in vitro the ORF8-induced inflammasome response can be readily inhibited by the select NLRP3 inhibitor MCC950. Our results identify the pathogenic cause and mechanism of severe disease, and a potential new treatment of severe Covid-19.

Trajectories: a framework for detecting temporal clinical event sequences from health data standardized to the OMOP Common Data Model

Objective: To develop a framework for identifying prominent clinical event trajectories from OMOP-formatted observational healthcare data. Methods: A four-step framework based on significant temporal event pair detection is described and implemented as an open-source R package. It is used on a population-based Estonian dataset to first replicate a large Danish population-based study and second, to conduct a disease trajectory detection study for Type 2 Diabetes patients in the Estonian and Dutch databases as an example. Results: As a proof of concept, we apply the methods in the Estonian database and provide a detailed breakdown of our findings. All Estonian population-based event pairs are shown. We compare the event pairs identified from Estonia to Danish and Dutch data and discuss the causes of the differences. Conclusions: For the first time, there is a complete software package for detecting disease trajectories in health data.

QOLP-37. MOOD DISTURBANCE IN PATIENTS WITH CENTRAL NERVOUS SYSTEM (CNS) TUMORS DURING THE COVID-19 PANDEMIC

BACKGROUND Primary CNS tumors are associated with uncertainty likely contributing to mood disturbance that is common throughout the disease trajectory. The intersection of the COVID-19 pandemic with a CNS tumor diagnosis may further impact the anxiety/depression experienced in this population. This study assessed key anxiety/depression symptoms in patients with CNS tumors prior to and during the COVID year. METHODS Patient reported outcomes (PROs), including the PROMIS Anxiety and Depression Short Forms and EQ-5D-3L, were collected at the time of clinical or telehealth evaluation from the COVID year (March 2020-February 2021) and were compared to assessments through February 2020 (a NOB-normative sample), reflecting what we would typically see in our regular clinic evaluations. RESULTS The COVID sample (N = 178) was primarily White (82%), male (55%), median age of 45 (range 18–79), and KPS ³ 90 (50%). The majority had high grade (70%) brain (83%) tumors with ³ 1 prior recurrence (60%) and 25% were on active treatment. Visits were primarily conducted via telehealth (64%) and 20% had progression at assessment. Compared to the NOB-normative sample, patients reported significantly higher depression scores (moderate-severe, 17% vs. 12%, p < 0.05), but not anxiety (18% vs. 16%). Eleven percent reported both moderate-severe anxiety and depressive symptoms (8% pre-COVID). Overall health assessed by the EQ-5D-3L was similar to the normative sample in all dimensions, apart from impact of moderate/extreme mood disturbance, which was more prevalent in the COVID year (53% vs. 43%, p < 0.05%). CONCLUSION Patients with CNS tumors are at risk for significant symptoms of depression and anxiety; this risk was heightened during the COVID year. Further evaluation of clinical factors associated with risk are underway. These findings highlight the need for assessments and interventions that can be administered via telehealth to address the mental health needs of this vulnerable population. Radiobiology

ID-PALL: An Instrument to Help You Identify Patients in Need of Palliative Care

Palliative care is frequently associated with the end of life and cancer. However, other patients may need palliative care, and this need may be present earlier in the disease trajectory. It is therefore essential to identify at the right time patients who need palliative care and to distinguish between those in need of general palliative care and those for whom a referral to specialists is required. ID-PALL has been developed as an instrument to support professionals in this identification and to discuss a suitable palliative care project, in order to maintain the best quality of life for patients and their relatives. Recommendations for clinical practice are also proposed to guide professionals after the identification phase.

P.078 Clinical Milestones in PSP and MSA may be Appropriate Triggers for Palliative Care Intervention

Background: Progressive supranuclear palsy (PSP) and multiple system atrophy (MSA) are progressive neurodegenerative disorders with complex symptom burden and unpredictable disease trajectories. The ideal timing of palliative care interventions is uncertain given the variable natural history of both diseases. Methods: A systematic review was conducted to identify publications investigating predictors of survival in PSP and MSA. A medical librarian assisted to ensure comprehensive search strategy. Relevant literature on palliative care in PSP and MSA was also reviewed. Results from both searches were qualitatively combined in order to suggest triggers for targeted palliative care throughout the disease trajectory. Results: ‘Milestones’ are well documented and clinically relevant disease points that prompt further care. Important milestones include: frequent falls, cognitive impairment, unintelligible speech, severe dysphagia, wheelchair dependence, urinary catheterisation, and nursing home placement. PSP-Richardson syndrome accumulates milestones earlier than PSP-Parkinsonism or MSA. Many PSP patients already have falls and cognitive impairment at the time of diagnosis. Time from milestone to death is variable. Conclusions: Milestones can be used to trace disease progression and help predict survival. Clinical milestones are likely to be important triggers for targeted palliative care interventions including the early incorporation of a palliative approach to care or referral to specialised palliative care services.

Patients with multiple myeloma referred for palliative care consultation: from retrospective analysis to future directions to improve clinical outcomes

Introduction New treatments have improved the overall survival of patients with multiple myeloma (MM). At diagnosis and during the course of the disease, patients often report pain and other symptoms. Given the long disease trajectory, psychological and social issues are also frequent. Recently, the potential usefulness of early palliative care (EPC) was hypothesized in the area of hematology. We conducted a retrospective analysis of patients with MM referred to our institute for a palliative care (PC) consultation between January 2017 and June 2020. Our aim was to evaluate the main reasons (pain or other clinical symptoms) for the referral for a first PC consultation. Methods We examined the main reasons for the first PC consultation, the number of PC consultations carried out, and the period of time between diagnosis, first and subsequent PC visits, and death. We also recorded information on the type of pain experienced and the treatments administered. Results Of the 325 patients with MM followed at our hematology unit during the study period, 43 were referred for a PC consultation (39 for pain management and 4 to determine the most appropriate care setting (hospice or palliative homecare service)). Nineteen (44.2%) of the 43 patients reported other symptoms in addition to pain. The median time between MM diagnosis and the first PC consultation was 473 days. Fifteen patients died, with a median 332 days between the first PC visit and death. Conclusion Randomized studies on MM involving larger patient populations with access to EPC are needed to identify an effective clinical model to improve the management of patients with MM.