Sleeping-related distress in a palliative care population: A national, prospective, consecutive cohort

2021 ◽  
pp. 026921632199855
Author(s):  
David C Currow ◽  
Walter Davis ◽  
Alanna Connolly ◽  
Anu Krishnan ◽  
Aaron Wong ◽  
...  
Keyword(s):  
Palliative Care ◽  
Karnofsky Performance Status ◽  
Point Of Care ◽  
Performance Status ◽  
Symptom Assessment ◽  
Direct Care ◽  
Mental Wellbeing ◽  
Residential Aged Care ◽  
Poor Sleep ◽  
Patient Reported

Background: Sleep, a multi-dimensional experience, is essential for optimal physical and mental wellbeing. Poor sleep is associated with worse wellbeing but data are scarce from multi-site studies on sleeping-related distress in palliative care populations. Aim: To evaluate patient-reported distress related to sleep and explore key demographic and symptom distress related to pain, breathing or fatigue. Design: Australian national, consecutive cohort study with prospectively collected point-of-care data using symptoms from the Symptom Assessment Scale (SAS). Setting/Participants: People ( n = 118,117; 475,298 phases of care) who died while being seen by specialist palliative care services ( n = 152) 2013–2019. Settings: inpatient (direct care, consultative); community (outpatient clinics, home, residential aged care). Results: Moderate/severe levels of sleeping-related distress were reported in 11.9% of assessments, more frequently by males (12.7% vs 10.9% females); people aged <50 years (16.2% vs 11.5%); and people with cancer (12.3% vs 10.0% for other diagnoses). Sleeping-related distress peaked with mid-range Australia-modified Karnofsky Performance Status scores (40–60). Strong associations existed between pain-, breathing- and fatigue-related distress in people who identified moderate/severe sleeping-related distress, adjusted for age, sex and functional status. Those reporting moderate/severe sleeping-related distress were also more likely to experience severe pain-related distress (adjusted odds ratios [OR] 6.6; 95% confidence interval (CI) 6.3, 6.9); breathing-related distress (OR 6.2; 95% CI 5.8, 6.6); and fatigue-related distress (OR 10.4; 95% CI 9.99–10.8). Conclusions: This large, representative study of palliative care patients shows high prevalence of sleeping-related distress, with strong associations shown to distress from other symptoms including pain, breathlessness and fatigue.

scholarly journals Prevalence and severity of sleep difficulty in patients with a CNS cancer receiving palliative care in Australia

2019 ◽  
Vol 6 (6) ◽  
pp. 499-507 ◽  
Author(s):  
Megan S Jeon ◽  
Haryana M Dhillon ◽  
Joseph Descallar ◽  
Lawrence Lam ◽  
Samuel Allingham ◽  
...  
Keyword(s):  
Palliative Care ◽  
Psychological Distress ◽  
Multilevel Models ◽  
Point Of Care ◽  
Clinical Status ◽  
Symptom Assessment ◽  
Sleep Difficulty ◽  
Patient Reported ◽  
Care Outcomes ◽  
Sleep Difficulties

Abstract Background The literature describing the incidence of sleep difficulty in CNS cancers is very limited, with exploration of a sleep difficulty symptom trajectory particularly sparse in people with advanced disease. We aimed to establish the prevalence and longitudinal trajectory of sleep difficulty in populations with CNS cancers receiving palliative care nationally, and to identify clinically modifiable predictors of sleep difficulty. Methods A consecutive cohort of 2406 patients with CNS cancers receiving palliative care from sites participating in the Australian national Palliative Care Outcomes Collaboration were evaluated longitudinally on patient-reported sleep difficulty from point-of-care data collection, comorbid symptoms, and clinician-rated problems. Multilevel models were used to analyze patient-reported sleep difficulty. Results Reporting of mild to severe sleep difficulties ranged from 10% to 43%. Sleep scores fluctuated greatly over the course of palliative care. While improvement in patients’ clinical status was associated with less sleep difficulty, the relationship was not clear when patients deteriorated. Worsening of sleep difficulty was associated with higher psychological distress (P &lt; .0001), greater breathing problems (P &lt; .05) and pain (P &lt; .05), and higher functional status (P &lt; .001) at the beginning of care. Conclusions Sleep difficulty is prevalent but fluctuates widely in patients with CNS cancers receiving palliative care. A better-tailored sleep symptom assessment may be needed for this patient population. Early interventions targeting psychological distress, breathing symptoms, and pain for more functional patients should be explored to see whether it reduces sleep difficulties late in life.

scholarly journals The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0247250
Author(s):  
Barbara A. Daveson ◽  
Samuel Frederic Allingham ◽  
Sabina Clapham ◽  
Claire E. Johnson ◽  
David C. Currow ◽  
...  
Keyword(s):  
Palliative Care ◽  
Discriminant Validity ◽  
Point Of Care ◽  
Clinical Care ◽  
Secondary Analysis ◽  
Symptom Assessment ◽  
Routine Care ◽  
Assessment Scale ◽  
Patient Reported ◽  
Symptom Assessment Scale

Background Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). Methods A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS’s internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. Results Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. Conclusion PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.

scholarly journals Palliative Care and COVID-19 Pandemic: Retrospective Study of Factors Associated With Infection and Death at an Oncological Palliative Care Reference Center

2021 ◽  
pp. 104990912098696
Author(s):  
Livia Costa de Oliveira ◽  
Karla Santos da Costa Rosa ◽  
Ana Luísa Durante ◽  
Luciana de Oliveira Ramadas Rodrigues ◽  
Daianny Arrais de Oliveira da Cunha ◽  
...  
Keyword(s):  
Diabetes Mellitus ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
Tumor Type ◽  
Advanced Cancer Patients ◽  
Factors Associated ◽  
Reactive Protein

Background: Advanced cancer patients are part of a group likely to be more susceptible to COVID-19. Aims: To describe the profile of advanced cancer inpatients to an exclusive Palliative Care Unit (PCU) with the diagnosis of COVID-19, and to evaluate the factors associated with death in these cases. Design: Retrospective cohort study with data from advanced cancer inpatients to an exclusive PCU, from March to July 2020, with severe acute respiratory syndrome. Diagnostic of COVID-19 and death were the dependent variables. Logistic regression analyses were performed, with the odds ratio (OR) and 95% confidence interval (CI). Results: One hundred fifty-five patients were selected. The mean age was 60.9 (±13.4) years old and the most prevalent tumor type was breast (30.3%). Eighty-three (53.5%) patients had a diagnostic confirmation of COVID-19. Having diabetes mellitus (OR: 2.2; 95% CI: 1.1-6.6) and having received chemotherapy in less than 30 days before admission (OR: 3.8; 95% CI: 1.2-12.2) were associated factors to diagnosis of COVID-19. Among those infected, 81.9% died and, patients with Karnofsky Performance Status (KPS) < 30% (OR: 14.8; 95% CI 2.7-21.6) and C-reactive protein (CRP) >21.6mg/L (OR: 9.3; 95% CI 1.1-27.8), had a greater chance of achieving this outcome. Conclusion: Advanced cancer patients who underwent chemotherapy in less than 30 days before admission and who had diabetes mellitus were more likely to develop Coronavirus 2019 disease. Among the confirmed cases, those hospitalized with worse KPS and bigger CRP were more likely to die.

scholarly journals Implementing person-centred outcome measures (PCOMs) into routine palliative care: A protocol for a mixed-methods process evaluation of The RESOLVE PCOM Implementation Strategy

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e051904
Author(s):  
Andy Bradshaw ◽  
Martina Santarelli ◽  
Assem M Khamis ◽  
Kathryn Sartain ◽  
Miriam Johnson ◽  
...  
Keyword(s):  
Palliative Care ◽  
Mixed Methods ◽  
Process Evaluation ◽  
Outcome Measures ◽  
Implementation Strategy ◽  
Public Involvement ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
Care Practice ◽  
Ethical Approval

IntroductionPerson-centred outcome measures improve quality of care and patient outcomes but are used inconsistently in palliative care practice. To address this implementation gap, we developed the ‘RESOLVE Implementation Strategy’. This protocol describes a process evaluation to explore mechanisms through which this strategy does, or does not, support the implementation of outcome measures in routine palliative care practice.Methods and analysisMultistrand, mixed-methods process evaluation. Strand one will collect routine outcomes data (palliative Phase of Illness, Integrated Palliative care Outcomes Scale, Australia-modified Karnofsky Performance Status) to map the changes in use of outcome measures over 12 months (July 2021–July 2022). Strand two will collect survey data over the same 12-month period to explore how professionals’ understandings of, skills in using and ability to build organisational practices around, outcome measures change over time. Strand three will collect interview data to understand the mechanisms underpinning/affecting our implementation strategy. Thematic framework analysis and descriptive statistics will be used to analyse qualitative and quantitative data, respectively.Ethics and disseminationFor strand one, ethical approval has been obtained (Cambridge REC, REF: 20/EE/0188). For strands two and three, ethical approval has been obtained from Hull York Medical School ethics committee (2105). Tailored feedback of study findings will be provided to participating sites. Abstracts and papers will be submitted to national/international conferences and peer-reviewed journals. Lay and policy briefings and newsletters will be shared through patient and public involvement and project networks, plus via the project website.

scholarly journals Prescreening of Patient-reported Symptoms using the Edmonton Symptom Assessment System (ESAS) in Outpatient Palliative Cancer Care

2019 ◽  
Author(s):  
Garden Lee ◽  
Han Sang Kim ◽  
Si Won Lee ◽  
Eun Hwa Kim ◽  
Bori Lee ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Care ◽  
Severe Symptom ◽  
Symptom Burden ◽  
Symptom Assessment ◽  
Assessment System ◽  
Advanced Cancer Patients ◽  
Edmonton Symptom Assessment System ◽  
Patient Reported

Abstract Background: Although early palliative care is associated with a better quality of life and improved outcomes in end-of-life cancer care, the criteria of palliative care referral are still elusive. Methods: We collected patient-reported symptoms using the Edmonton Symptom Assessment System (ESAS) at the baseline, first, and second follow-up visit. The ESAS evaluates ten symptoms: pain, fatigue, nausea, depression, anxiety, drowsiness, dyspnea, sleep disorder, appetite, and wellbeing. A total of 71 patients were evaluable, with a median age of 65 years, male (62%), and the Eastern Cooperative Oncology Group (ECOG) performance status distribution of 1/2/3 (28%/39%/33%), respectively. Results: Twenty (28%) patients had moderate/severe symptom burden with the mean ESAS ≥5. Interestingly, most of the patients with moderate/severe symptom burdens (ESAS ≥5) had globally elevated symptom expression. While the mean ESAS score was maintained in patients with mild symptom burden (ESAS<5; 2.7 at the baseline; 3.4 at the first follow-up; 3.0 at the second follow-up; P =0.117), there was significant symptom improvement in patients with moderate/severe symptom burden (ESAS≥5; 6.5 at the baseline; 4.5 at the first follow-up; 3.6 at the second follow-up; P <0.001). Conclusions: Advanced cancer patients with ESAS ≥5 may benefit from outpatient palliative cancer care. Prescreening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.

Prevalence of Extrapyramidal Symptoms in Cancer Patients Referred to Palliative Care: A Multicenter Observational Study (JORTC PAL12)

2020 ◽  
pp. 104990912096044
Author(s):  
Hiroto Ishiki ◽  
Jun Hamano ◽  
Hiroka Nagaoka ◽  
Yoshinobu Matsuda ◽  
Akihiro Tokoro ◽  
...  
Keyword(s):  
Palliative Care ◽  
Observational Study ◽  
Medical Information ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
Extrapyramidal Symptoms ◽  
University Hospital ◽  
Cutoff Score ◽  
Symptom Scale ◽  
Palliative Care Setting

Background: Neuroleptics are commonly used in palliative care settings. However, adverse events of neuroleptics, known as extrapyramidal symptoms (EPSs), might be overlooked in clinical practice. We conducted this study to explore the prevalence of EPSs in palliative care setting. Methods: This multicenter, prospective, observational study included patients who 1) were referred to either a specialist palliative care team or a palliative care unit, 2) had a diagnosis of cancer, and 3) were ≥20 years of age. We investigated the prevalence of EPSs and medications used. The primary outcome was the overall Drug-Induced Extrapyramidal Symptom Scale (DIEPSS) score. Results: Between November 2015 and October 2016, 149 patients from 5 centers in Japan were enrolled. The median age was 67 years (range: 21–88 years) and the study population included 81 men (54.4%). The cancer types included lung (55 patients, 36.9%), upper gastrointestinal tract (5, 3.3%), hepatobiliary (19, 12.8%); breast (12, 8.1%); head and neck (10, 6.7%), gynecologic (10, 6.7%), genitourinary (10, 6.7%), and others (28, 18.8%). The median Karnofsky performance status was 60 (20–100). Most patients (86.6%) did not experience delirium. Thirty-nine (26.2%) patients received one or more EPS-inducing medications. EPSs occurred in 4 (2.7%) patients with a cutoff score of 5 points for 5 parkinsonism items in DIEPSS. Conclusion: A lower frequency (<3%) of patients than expected in this population had EPSs. Therefore, we concluded that an interventional study is not feasible. However, medications that cause EPSs are often used in palliative care; therefore, a longitudinal study is warranted. Trial registration: This study was registered in the University Hospital Medical Information Network Clinical Trials Registry (UMIN-CTR) (UMIN000019810) on 16, November, 2015.

Comorbidity and survival in cancer patients receiving palliative care

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9066-9066
Author(s):  
V. T. Chang ◽  
N. Sambamoorthi ◽  
B. Zhou ◽  
H. Yan ◽  
M. L. Gonzalez ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Rating Scale ◽  
Cox Regression ◽  
Early Stage ◽  
Karnofsky Performance Status ◽  
Performance Status ◽  
Survival Analyses ◽  
Comorbidity Index

9066 Background: Comorbidity has received increasing attention in the assessment of patients with early stage cancer, or at diagnosis. We studied whether three indices of comorbidity, the Charlson Comorbidity Index (CMI), the Cumulative Illness Rating Scale (CIRS), and the Kaplan Feinstein Index (KFI) add prognostic information for cancer patients receiving palliative care. Methods: In an IRB approved protocol, 103 patients with advanced cancer were seen at the time they were starting palliative care. They had a Karnofsky Performance Status (KPS) determination, and were followed longitudinally. Comorbidity scores were coded from the medical record. At this time, all patients had died and survival analyses were performed. Results: The median age was 69 years (range 41–87), median Karnofsky Performance Status (KPS) was 70% (range 20–90); primary sites were lung 41 pts (40%), prostate 23pts (22%), colorectal 10 pts (10%), other cancers 29 pts (28%). Median survival was 111 days (range 4–1,145 days). Median CMI was 10 (range 4–14), CIRS15 4 (2–5), CIRS16 9 (4–12), CIRS17 2.3 (1.5–3.33), CIRS18 1 (0–3), KFI 2 (0–3). In univariate survival analyses, when bisected by median values, the KPS, age, CMI, and subscales of the CIRS (CIRS 16, CIRS 17, CIRS18) were significantly related to survival, but not the KFI. In multivariate Cox regression analyses that included KPS (p<0.0001) and age (p<0.003) and a comorbidity index, the CMI (p<0.0001), and certain subscales of the CIRS were independently predictive of survival, specifically the CIRS 15 (p<0.0001), CIRS16 (p<0.0001), CIRS 17 (p<0.0001), and CIRS18 (p<0.0001). The primary site was not an independent survival predictor. Conclusion: In patients with advanced cancer receiving palliative care, measures of comorbidity may contribute to refining estimates of prognosis and ultimately to health care resource utilization. The optimal comorbidity measure remains to be determined. These results will be confirmed in larger populations. Supported in part by the Soros Open Society Institute Project Death in America and VA HSRD IIR 02–103 No significant financial relationships to disclose.

Predictive value of the patient reported outcome “living with cancer” instrument on overall survival in advanced cancer patients: A tool for guiding timing of palliative care consultations.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10025-10025
Author(s):  
Stuart L. Goldberg ◽  
Dhakshila Paramanathan ◽  
Srikesh Arunajadai ◽  
Victoria DeVincenzo ◽  
Ruth Pe Benito ◽  
...  
Keyword(s):  
Palliative Care ◽  
Overall Survival ◽  
Advanced Cancer ◽  
Cox Model ◽  
Performance Status ◽  
Patient Reported Outcome ◽  
Cancer Type ◽  
Advanced Cancer Patients ◽  
Patient Reported ◽  
Living With Cancer

10025 Background: The Living with Cancer (LWC) patient reported outcome (PRO) instrument evaluates distress from the point of view of the advanced cancer pt. The 7-item Likert survey measures 4 personhood domains (performance status, pain, burden [financial and family], depression) with scores ranging 0-112. In a pilot study of 433 cancer pts at a single center a score of >28 was associated with an increased likelihood of physician’s (blinded) opinion of need for end-of-life care discussions ( J Palliative Med 2016). Methods: The LWC instrument is a statistically validated PRO (ASCO Palliative Care Symposium 2016). LWC was administered to 1024 cancer pts receiving non-curative therapy at 7 centers (Regional Cancer Care Associates, NJ) from Sept 2015 - Oct 2016. LWC surveys were linked to the Cota database, which extracts and enriches data from EHRs. Date of survey was used as the start point in time-to-event analysis. Results: 290 (28%) pts expired during the study (median f/u 9.9 months). 267 (26%) pts exceeded the threshold score of 28 defined in the pilot set (28 was also independently this study’s optimal cut point). Pts with an LWC score >28 had inferior 6 and 12 mo overall survival (69% and 54%) vs pts with scores <29 (88% and 73%) (log rank p<0.001). A Cox model demonstrated that LWC score and cancer type were significant (LWC: p<0.001, cancer types (compared to B): GI p<0.001, GU: p=0.013, T: p<0.001, M: p=0.334) A one point score increase in LWC resulted in a 1.8% increase in expected hazard. Among solid tumor pts with LWC >28, 20% died within the next 3 mo and 35% died within the next 6 mo, indicating appropriate timing for hospice and palliative care consults, respectively. Conclusions: Pt responses to the LWC instrument predict survival among advanced cancer pts and may be useful in guiding timing of palliative care consultations. [Table: see text]

The impact of routine Edmonton symptom assessment system use on receiving palliative care services: results of a population-based retrospective-matched cohort analysis

2020 ◽  
pp. bmjspcare-2020-002220
Author(s):  
Lisa Barbera ◽  
Rinku Sutradhar ◽  
Craig C Earle ◽  
Doris Howell ◽  
Nicole Mittman ◽  
...  
Keyword(s):  
Palliative Care ◽  
Cohort Analysis ◽  
Symptom Assessment ◽  
Assessment System ◽  
Matched Cohort ◽  
Edmonton Symptom Assessment System ◽  
Care Services ◽  
Patient Reported ◽  
Palliative Care Services ◽  
The Impact

BackgroundIn 2007, Cancer Care Ontario began standardised symptom assessment as part of routine care using the Edmonton Symptom Assessment System (ESAS).AimThe purpose of this study was to evaluate the impact of ESAS on receipt of palliative care when compared with a matched group of unexposed patients.DesignA retrospective-matched cohort study examined the impact of ESAS screening on initiation of palliative care services provided by physicians or homecare nurses. The study included adult patients diagnosed with cancer between 2007 and 2015. Exposure was defined as completing ≥1 ESAS during the study period. Using 4 hard and 14 propensity score-matched variables, patients with cancer exposed to ESAS were matched 1:1 to those who were not. Matched patients were followed from first ESAS until initiation of palliative care, death or end of study.ResultsThe final cohort consisted of 204 688 matched patients with no prior palliative care consult. The pairs were well matched. The cumulative incidence of receiving palliative care within the first 5 years was higher among those exposed to ESAS compared with those who were not (27.9% (95% CI: 27.5% to 28.2%) versus 27.9% (95% CI: 27.5% to 28.2%)), when death is considered as a competing event. In the adjusted cause-specific Cox proportional hazards model, ESAS assessment was associated with a 6% increase in palliative care services (HR: 1.06, 95% CI: 1.04 to 1.08).ConclusionWe have demonstrated that patients exposed to ESAS were more likely to receive palliative care services compared with patients who were not exposed. This observation provides real-world data of the impact of routine assessment with a patient-reported outcome.

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