scholarly journals Symptom burden and clinical profile of COVID-19 deaths: a rapid systematic review and evidence summary

2020 ◽  
Vol 10 (4) ◽  
pp. 381-384 ◽  
Author(s):  
Paul Keeley ◽  
Deans Buchanan ◽  
Clare Carolan ◽  
Lara Pivodic ◽  
Simon Tavabie ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Symptom Control ◽  
Data Gathering ◽  
Symptom Burden ◽  
Published Evidence ◽  
Evidence Summary ◽  
Ethical Norms ◽  
Significant Symptom ◽  
Mode Of Death

The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients.MethodsWe undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19.Results12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure.ConclusionsThere remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.

Antibiotic use towards the end of life: development of good practice recommendations

2021 ◽  
pp. bmjspcare-2020-002732
Author(s):  
R Andrew Seaton ◽  
Lesley Cooper ◽  
Jack Fairweather ◽  
Stephen Fenning ◽  
Libby Ferguson ◽  
...  
Keyword(s):  
End Of Life ◽  
Good Practice ◽  
Symptom Burden ◽  
Antibiotic Use ◽  
Antibiotic Prescribing ◽  
Optimal Care ◽  
Time To Death ◽  
Practice Recommendations ◽  
Published Evidence ◽  
Future Care

ObjectivesDevelopment of evidence-based good practice recommendations for clinicians considering the use of antibiotics in patients towards the end of life.DesignA multiprofessional group of experts in end-of-life care and antimicrobial stewardship was convened. Findings from a scoping review of the literature and a consultation of clinicians were triangulated. Expert discussion was used to generate consensus on how to approach decision-making.SettingRepresentatives from hospital and a range of community health and care settings.ParticipantsMedical, pharmacy and nursing professionals.Main outcome measuresGood practice recommendations based on published evidence and the experience of prescribers in Scotland.ResultsThe findings of 88 uncontrolled, observational studies of variable quality were considered alongside a survey of over 200 prescribers. No national or international guidelines were identified. Antibiotic use towards the end of life was common but practice was highly variable. The potential harms associated with giving antibiotics tended to be less well considered than the potential benefits. Antibiotics often extended the length of time to death but this was sometimes at the cost of higher symptom burden. There was strong consensus around the importance of effective communication with patients and their families and making treatment decisions aligned to a patient’s goals and priorities.ConclusionsGood practice recommendations were agreed with focus on three areas: making shared decisions about future care; agreeing clear goals and limits of therapy; reviewing all antibiotic prescribing decisions regularly. These will be disseminated widely to support optimal care for patients towards the end of life. A patient version of the recommendations has also been produced to support implementation.

An evaluation of the QUAL-EC in the clinical care of patients with advanced cancer.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 85-85
Author(s):  
Anne Wilkinson ◽  
Susan Slatyer ◽  
Anna Nowak ◽  
Cathy Pienaar ◽  
Anil Tandon
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Clinical Care ◽  
Symptom Control ◽  
Symptom Burden ◽  
Tertiary Hospital ◽  
Face Validity ◽  
Unexpected Finding ◽  
Cross Sectional ◽  
Distress Score

85 Background: We piloted the Quality of Life at the End of Life (QUAL-E) in Australian palliative care in-patients (N = 52) and demonstrated feasibility, acceptability and face validity. An unexpected finding was the potential for the QUAL-E to prompt psycho-social-spiritual discussion when conducted as an interview, indicating opportunities for enhanced support.We compared a 17-item QUAL-E-Cancer (QUAL-EC) to the Distress Thermometer Screening Tool (DT) and participants’ experience when the QUAL-EC was conducted as an interview. Methods: A cross-sectional, mixed methods design was used. Convenience sampling recruited patients (N = 50) with advanced cancer and a prognosis of less than 12 months from a tertiary hospital. Participants completed the DT, followed by the QUAL-EC which was digitally recorded as an interview. Results: Correlational and thematic analysis found that 39.6% of participants reported severe distress (score ≥7) while 40% reported moderate distress (score 4-6) on the DT. Levels of distress significantly correlated with two QUAL-EC domains: symptom control ( r= 0.52, p < 0.001) and preparation for end of life ( r= 0.32, p < 0.05). Qualitative analysis identified six themes: the health care team; family issues; approaching death; worry; coping and QUAL-EC experience. Feasibility: completion of the QUAL-EC ranged from 3-14 minutes (M = 7.37 minutes, SD 3.05 minutes). Acceptability: Participants overwhelmingly found the questions to be clear and did not find the questions hard to understand, hard to answer or stressful. Ninety per cent of participants agreed or strongly agreed that they were glad they took part. Conclusions: Patient distress was associated with either symptom burden or concerns about their family/loved ones. When distress is identified on screening, the QUAL-EC offers good potential for nuanced, versus vague, assessment of globalised distress (e.g., DT) as an aid in targeting patient-centered clinical/psycho-social interventions.

Physician Approaches to Addressing Conflict Arising in End-of-Life Decision-Making in the Adult Intensive Care Unit: A Systematic Review

2021 ◽  
Vol 66 (Special Issue) ◽  
pp. 99-100
Author(s):  
Harleen Johal ◽  
◽  
◽  
Keyword(s):  
Systematic Review ◽  
Intensive Care Unit ◽  
Decision Making ◽  
Intensive Care ◽  
End Of Life ◽  
Research Question ◽  
Best Interests ◽  
Healthcare Team ◽  
Adult Intensive Care Unit ◽  
Published Evidence

"Background: Conflict is unfortunately well-documented in the adult intensive care unit (AICU). In the context of end-of-life (EOL) decision-making (i.e. the withdrawal or withholding of life-sustaining treatment), conflict commonly occurs when a consensus cannot be reached between the healthcare team and the patient’s family on the “best interests” of the critically ill, incapacitated patient, as per England’s Mental Capacity Act 2005. Whilst existing literature has identified potential routes for conflict resolution, it is less clear how these approaches are perceived and utilised by stakeholders in the EOL decision-making process. Aim: We aim to explore this by systematically reviewing and synthesising the published evidence, which addresses the following research question: what does existing qualitative research reveal about physician approaches to addressing conflict arising in EOL decisions in the AICU? Methods: Peer-reviewed qualitative studies (retrieved from MEDLINE, Project Muse, EMBASE, Web of Science, PsycINFO, CINAHL and LILACS) examining conflict and dispute resolution in the context of EOL decisions in the AICU setting will be included. Two reviewers will independently screen for eligibility and extract data from either all or 10% of the included studies, with a third reviewer independently screening studies of uncertain eligibility. The ‘thematic synthesis’ approach will be utilised to analyse the resulting data (Thomas & Harden, 2008). The systematic review is currently underway, laying the foundations for a larger empirical study, undertaken for a PhD, funded by the Wellcome Trust BABEL (Balancing Best Interests in Healthcare, Ethics, and Law) Collaborative Award. The results will be presented at the conference. "

Evaluating the utility of the QUAL-EC in the clinical care of patients with advanced cancer.

2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 86-86
Author(s):  
Anne Wilkinson ◽  
Susan Slatyer ◽  
Anna Nowak ◽  
Cathy Pienaar ◽  
Anil Tandon ◽  
...  
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Clinical Care ◽  
Symptom Control ◽  
Symptom Burden ◽  
Tertiary Hospital ◽  
Face Validity ◽  
Unexpected Finding ◽  
Cross Sectional ◽  
Distress Score

86 Background: We piloted the Quality of Life at the End of Life (QUAL-E) in Australian palliative care in-patients (N=52) and demonstrated feasibility, acceptability and face validity. An unexpected finding was the potential for the QUAL-E to prompt psycho-social-spiritual discussion when conducted as an interview, indicating opportunities for enhanced support. For this study, we compared a 17-item QUAL-E-Cancer (QUAL-EC) to the Distress Thermometer Screening Tool (DT) and participants’ experience when the QUAL-EC was conducted as an interview. Methods: A cross-sectional, mixed methods design was used. Convenience sampling recruited patients (N=50) with advanced cancer and a prognosis of less than 12 months from a tertiary hospital. Participants completed the DT, followed by the QUAL-EC which was digitally recorded as an interview. Results: Correlational and thematic analysis found that 39.6% of participants reported severe distress (score ≥7) while 40% reported moderate distress (score 4-6) on the DT. Levels of distress significantly correlated with two QUAL-EC domains: symptom control (r=0.52, p<0.001) and preparation for end of life (r=0.32, p<0.05). Qualitative analysis identified six themes: the health care team; family issues; approaching death; worry; coping and QUAL-EC experience. Feasibility: completion of the QUAL-EC ranged from 3-14 minutes (M=7.37 minutes, SD 3.05 minutes). Acceptability: Participants overwhelmingly found the questions to be clear and did not find the questions hard to understand, hard to answer or stressful. Ninety percent of participants agreed or strongly agreed that they were glad they took part. Conclusion. Patient distress was associated with either symptom burden or concerns about their family/loved ones. Conclusions: When distress is identified on screening, the QUAL-EC offers good potential for nuanced, versus vague assessment of globalised distress (e.g., DT) as an aid in targeting patient-centered clinical/psycho-social interventions.

Palliative care in patients with haematological neoplasms: An integrative systematic review

2017 ◽  
Vol 32 (1) ◽  
pp. 79-105 ◽  
Author(s):  
Deborah Moreno-Alonso ◽  
Josep Porta-Sales ◽  
Cristina Monforte-Royo ◽  
Jordi Trelis-Navarro ◽  
Anna Sureda-Balarí ◽  
...  
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
Home Care ◽  
End Of Life ◽  
Care Home ◽  
Symptom Burden ◽  
Improve Patient Care ◽  
Haematological Malignancies ◽  
Inclusion Criteria ◽  
Haematological Neoplasms

Background: Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies. Aim: To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments. Design: Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240). Data sources: PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies. Results: The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as ‘miscellany’. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking. Conclusion: Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.

scholarly journals Systematic Review of Pediatric Functional Gastrointestinal Disorders (Rome IV Criteria)

2021 ◽  
Vol 10 (21) ◽  
pp. 5087
Author(s):  
Angharad Vernon-Roberts ◽  
India Alexander ◽  
Andrew S Day
Keyword(s):  
Systematic Review ◽  
Functional Gastrointestinal Disorders ◽  
Symptom Burden ◽  
Functional Constipation ◽  
Final Analysis ◽  
Gastrointestinal Disorders ◽  
Prevalence Data ◽  
Irritable Bowel ◽  
Significant Symptom ◽  
Rome Iv

Functional gastrointestinal disorders (FGID) are common among children and may cause a significant symptom burden. The Rome criteria are symptom-based guidelines for the assessment of FGID among children and adults. The aim of this systematic review was to estimate the prevalence of FGID utilizing the revised Rome IV criteria. Nine health databases were searched. The inclusion criteria were: prospective FGID prevalence data using the Rome IV criteria for children up to 18 years, and the exclusion criteria were: cohorts with known gastrointestinal or organic conditions. The data were presented as a percentage of children experiencing at least one FGID, as well as in individual categories. The searches identified 376 papers, with 20 included in the final analysis, providing a pooled cohort of 18,935 children. The median prevalence of FGID for children aged up to four years was 22.2% (range 5.8–40%), and aged four–eighteen years was 21.8% (range 19–40%). The most common FGID for children aged 0–12 months was infant regurgitation, the most common FGID for those aged 13–48 months were functional constipation and cyclic vomiting, and, for those aged over four years, functional constipation, functional dyspepsia, and irritable bowel syndrome. This reported overall incidence of FGID may be used as a benchmark of normative data among the general population and comparative data for those with comorbid disease.

scholarly journals Anticipatory prescribing of injectable medications for adults at the end of life in the community: A systematic literature review and narrative synthesis

2018 ◽  
Vol 33 (2) ◽  
pp. 160-177 ◽  
Author(s):  
Ben Bowers ◽  
Richella Ryan ◽  
Isla Kuhn ◽  
Stephen Barclay
Keyword(s):  
End Of Life ◽  
Hospital Admissions ◽  
Symptom Relief ◽  
Symptom Control ◽  
Evidence Base ◽  
Research Quality ◽  
Cochrane Library ◽  
Narrative Synthesis ◽  
Published Evidence ◽  
The Impact

Background: The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. The evidence base to support this practice is unclear. Aim: To review the published evidence concerning anticipatory prescribing of injectable medications for adults at the end of life in the community. Design: Systematic review and narrative synthesis. Registered in PROSPERO: CRD42016052108, on 15 December 2016 ( https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=52108 ). Data sources: Medline, CINAHL, Embase, PsycINFO, Web of Science, Cochrane Library, King’s Fund, Social Care Online, and Health Management Information Consortium databases were searched up to May 2017, alongside reference, citation, and journal hand searches. Included papers presented empirical research on the anticipatory prescribing of injectable medications for symptom control in adults at the end of life. Research quality was appraised using Gough’s ‘Weight of Evidence’ framework. Results: The search yielded 5099 papers, of which 34 were included in the synthesis. Healthcare professionals believe anticipatory prescribing provides reassurance, effective symptom control, and helps to prevent crisis hospital admissions. The attitudes of patients towards anticipatory prescribing remain unknown. It is a low-cost intervention, but there is inadequate evidence to draw conclusions about its impact on symptom control and comfort or crisis hospital admissions. Conclusion: Current anticipatory prescribing practice and policy is based on an inadequate evidence base. The views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation. Further research is needed to investigate the impact of anticipatory prescribing on patients’ symptoms and comfort, patient safety, and hospital admissions.

scholarly journals Management of Malignant Ascites by Indwelling Tunnelled Catheters in Indian Setup: A Case Series

2021 ◽  
Vol 27 ◽  
pp. 349-353
Author(s):  
Praneeth Suvvari ◽  
Abhijit Nair ◽  
Srinivasa Shyam Prasad Mantha ◽  
Mohammad Salman Saifuddin ◽  
Vibhavari Naik ◽  
...  
Keyword(s):  
End Of Life ◽  
Treatment Options ◽  
Case Series ◽  
Symptom Burden ◽  
Malignant Ascites ◽  
Patient Comfort ◽  
Success Rates ◽  
Operation Theatre ◽  
Counseling And Assessment ◽  
Significant Symptom

Malignant Ascites (MA) poses significant symptom burden in patients with peritoneal malignancies at the end of life. Various treatment options are available and Indwelling Tunneled Catheters (ITC) have the advantage of increased patient comfort being soft on abdomen, less painful, easy to tap fluid, and less chances of infection etc. A total of 5 patients underwent insertion of ITC after proper counseling and assessment. Insertion was done in operation theatre under combined ultrasonogram and fluoroscopy guidance. Results: 4 out of 5 patients had favorable outcomes in terms of symptom free days spent at home at end of life. ITC’s are a suitable option to manage symptoms in patients with terminal malignant ascites. Careful patient selection and proper education of the caregivers will increase the success rates of procedures.

Evaluating the utility of the QUAL-EC in the clinical care of patients with advanced cancer.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21507-e21507
Author(s):  
Anne Wilkinson ◽  
Susan Slatyer ◽  
Anna K. Nowak ◽  
Cathy Pienaar ◽  
Anil Tandon ◽  
...  
Keyword(s):  
End Of Life ◽  
Advanced Cancer ◽  
Clinical Care ◽  
Symptom Control ◽  
Symptom Burden ◽  
Tertiary Hospital ◽  
Face Validity ◽  
Unexpected Finding ◽  
Cross Sectional ◽  
Distress Score

e21507 Background: We piloted the Quality of Life at the End of Life (QUAL-E) in Australian palliative care in-patients (N = 52) and demonstrated feasibility, acceptability and face validity. An unexpected finding was the potential for the QUAL-E to prompt psycho-social-spiritual discussion when conducted as an interview, indicating opportunities for enhanced support. We compared a 17-item QUAL-E-Cancer (QUAL-EC) to the Distress Thermometer Screening Tool (DT) and participants’ experience when the QUAL-EC was conducted as an interview. Methods: A cross-sectional, mixed methods design was used. Convenience sampling recruited patients (N = 50) with advanced cancer and a prognosis of less than 12 months from a tertiary hospital. Participants completed the DT, followed by the QUAL-EC which was digitally recorded as an interview. Results: Correlational and thematic analysis found that 39.6% of participants reported severe distress (score ≥ 7) while 40% reported moderate distress (score 4-6) on the DT. Levels of distress significantly correlated with two QUAL-EC domains: symptom control ( r= 0.52, p < 0.001) and preparation for end of life ( r= 0.32, p < 0.05). Qualitative analysis identified six themes: the health care team; family issues; approaching death; worry; coping and QUAL-EC experience. Feasibility: completion of the QUAL-EC ranged from 3-14 minutes (M = 7.37 minutes, SD 3.05 minutes). Acceptability: Participants overwhelmingly found the questions to be clear and did not find the questions hard to understand, hard to answer or stressful. Ninety per cent of participants agreed or strongly agreed that they were glad they took part. Conclusions: Patient distress was associated with either symptom burden or concerns about their family/loved ones. When distress is identified on screening, the QUAL-EC offers good potential for nuanced, versus vague, assessment of globalised distress (e.g., DT) as an aid in targeting patient-centered clinical/psycho-social interventions.

Symptom burden at the end of life for neuroendocrine tumors: A population-based analysis of patient-reported outcomes.

2019 ◽  
Vol 37 (4_suppl) ◽  
pp. 297-297
Author(s):  
Julie I. Hallet ◽  
Laura Davis ◽  
Alyson L. Mahar ◽  
Calvin Law ◽  
Lev Bubis ◽  
...  
Keyword(s):  
End Of Life ◽  
Severe Symptom ◽  
Symptom Control ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Population Based ◽  
Assessment System ◽  
Primary Tumor Site ◽  
Factors Associated ◽  
Patient Reported

297 Background: How to best support neuroendocrine tumor (NET) patients remains unclear. While the peri-diagnostic period has been investigated, there is no data regarding symptoms at the end of life, when suboptimal symptom control may be particularly burdensome. This study examined symptom trajectories and factors associated with high symptom burden in NET at the end of life. Methods: We conducted a population-based retrospective cohort study of NET diagnosed from 2004-2015, who died between 2007-2016. Prospectively collected patient-reported Edmonton Symptom Assessment System scores were linked to provincial administrative datasets. Moderate-to-severe symptom scores in the 6 months prior to death were presented by 2-week intervals. Multivariable Poisson regression identified factors associated with moderate-to-severe symptoms scores. Results: Among 677 decedents, 2,579 symptom assessments prior to death were analyzed. Overall, moderate-to-severe scores were most commonly reported for tiredness (86%), wellbeing (81%), lack of appetite (75%), and drowsiness (68%) at any time. This proportion changed over time, progressively increasing closer to death: 56.8% to 83.9% tiredness, 50.5% to 73.1% wellbeing, 40.9% to 80.6% lack of appetite, and 41.5% to 68.8% drowsiness. The increase was steeper in the 8 weeks before death for lack of appetite, drowsiness, and shortness of breath. On multivariate analyses, the risk of moderate-to-severe symptoms was significantly higher in the last 2 months prior to death and with shorter survival from diagnosis (< 6 months). Women reported a higher burden of anxiety, nausea, and pain than men. There was no association between symptom burden and age or primary tumor site. Conclusions: NET patients suffer a high symptom burden at the end of life, not previously described. The proportion of moderate-to-severe symptoms increases steeply as death nears, highlighting an opportunity for improved management. Combined with identified factors associated with moderate-to-severe symptom, this information is important to improve patient-centred and personalized supportive care for NET at the end of life.

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