Assessing hope at the end of life: Validation of an experience of hope scale in advanced cancer patients

2004 ◽  
Vol 2 (3) ◽  
pp. 243-253 ◽  
Author(s):  
CHERYL L. NEKOLAICHUK ◽  
EDUARDO BRUERA

Objective:The purpose of this study was to gather validity evidence for an innovative experience of hope scale, theHope Differential-Short (HDS), and evaluate its clinical utility for assessing hope in advanced cancer patients.Methods:A consecutive sampling approach was used to recruit 96 patients from an inpatient tertiary palliative care unit and three hospice settings. Each participant completed an in-person survey interview, consisting of the following measures: HDS (nine items), Herth Hope Index (HHI), hope visual analog scale (Hope-VAS) and Edmonton Symptom Assessment System (ESAS).Results:Using factor analytic procedures, a two-factor structure for the HDS was identified, consisting ofauthentic spirit(Factor I) andcomfort(Factor II). The HDS factors had good overall internal consistency (α = 0.83), with Factor I (α = 0.83) being higher than Factor II (α = 0.69). The two factors positively correlated with the HHI, Hope-VAS, and one of the ESAS visual analog scales, well-being (range: 0.38 to 0.64) and negatively correlated with depression and anxiety, as measured by the ESAS (range: −0.25 to −0.42).Significance of results:This is the first validation study of the HDS in advanced cancer patients. Its promising psychometric properties and brief patient-oriented nature provide a solid initial foundation for its future use as a clinical assessment measure in oncology and palliative care. Additional studies are warranted to gather further validity evidence for the HDS before its routine use in clinical practice.

2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 53-53
Author(s):  
YuJung Kim ◽  
Grace S. Ahn ◽  
Hak Ro Kim ◽  
Beodeul Kang ◽  
Sung Soun Hur ◽  
...  

53 Background: Acute Palliative Care Units (ACPUs) are novel inpatient programs in tertiary care centers that provide aggressive symptom management and assist transition to hospice. However, patients often die in the APCU before successfully transferring to hospice. The aim of this study was to evaluate the symptom burden and characteristics of advanced cancer patients who die in the APCU. Methods: We retrospectively reviewed the medical records of all advanced cancer patients admitted to the APCU between April, 2015 and March, 2016 at a tertiary cancer center in Korea. Basic characteristics and symptom burden assessed by the Edmonton Symptom Assessment System (ESAS) were obtained from consultation upon APCU admission. Statistical analyses were conducted to compare patients who died in the APCU with those who were discharged alive. Results: Of the 267 patients analyzed, 87 patients (33%) died in the APCU. The median age of patients was 66 (range, 23-97). Patients who died in the APCU had higher ESAS scores of drowsiness (6 vs 5, P = 0.002), dyspnea (4 vs 2, P = 0.001), anorexia (8 vs 6, P = 0.014) and insomnia (6 vs 4, P = 0.001) compared to patients who discharged alive. Total symptom distress scores (SDS) were also significantly higher (47 vs 40, P = 0.001). Patients who died in the APCU were more likely to be male (odds ratio [OR] for female patients 0.38, 95% confidence interval [CI] 0.22-0.67, P < 0.001) and have higher ESAS scores of drowsiness (OR 2.08, 95% CI, 1.08-3.99, P = 0.029) and dyspnea (OR 2.19, 95% CI 1.26-3.80, P = 0.005). These patients showed significantly shorter survival after APCU admission (7 days vs 31 days, P < 0.001). Conclusions: Advanced cancer patients who die in the APCU are more likely to be male and have significantly higher symptom burden that include drowsiness and dyspnea. These patients show rapid clinical deterioration after APCU admission. More proactive and timely end-of-life care is needed for these patients.


Author(s):  
Oscar Corli ◽  
Giacomo Pellegrini ◽  
Cristina Bosetti ◽  
Luca Riva ◽  
Matteo Crippa ◽  
...  

Background: Cancer patients experience multiple symptoms throughout the course of the disease. We aimed to provide a comprehensive analysis of the symptom burden in patients with advanced cancer at admission to specialist palliative care (PC) services and seven days later to estimate the immediate impact of PC intervention. Patient and methods: The analysis was based on an observational, prospective, multicenter study (named DEMETRA) conducted in Italy on new patients accessing network specialist PC centers during the period May 2017–November 2017. The prevalence and intensity of symptoms were assessed at baseline and after seven days using three tools including the Edmonton Symptom Assessment System (ESAS). Results: Five PC centers recruited 865 cancer patients. Thirty-three different symptoms were observed at the baseline, the most frequent being asthenia (84.9%) and poor well-being (71%). The intensity of the most frequent symptoms according to ESAS ranged from 5.5 for asthenia to 3.9 for nausea. The presence and intensity of physical symptoms increased with increasing levels of anxiety and depression. After seven days, prevalence of nausea and breathlessness as well as intensity of almost all symptoms significantly decreased. Conclusions: The study confirmed the considerable symptom burden of patients with advanced cancer. PC intervention has significantly reduced the severity of symptoms, despite the patients’ advanced disease and short survival.


2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 19-19
Author(s):  
YuJung Kim ◽  
Yi Zhang ◽  
Ji Chan Park ◽  
David Hui ◽  
Gary B. Chisholm ◽  
...  

19 Background: The Eastern Cooperative Oncology Group (ECOG) performance status (PS) is one of the most commonly used assessment tools among oncologists and palliative care specialists caring advanced cancer patients. However, the inter-observer difference between the oncologist and palliative care specialist has never been reported. Methods: We retrospectively reviewed the medical records of all patients who were first referred to an outpatient palliative care clinic in 2013 and identified 278 eligible patients. The ECOG PS assessments by palliative care specialists, nurses, and oncologists, and the symptom burden measured by Edmonton Symptom Assessment Scale (ESAS) were analyzed. Results: According to the pairwise comparisons using Sign tests, palliative care specialists rated the ECOG PS grade significantly higher than oncologists (median 0.5 grade, P<0.0001) and nurses also rated significantly higher (median 1.0 grade, P<0.0001). The assessments of palliative care specialists and nurses were not significantly different (P=0.10). Weighted kappa values for inter-observer agreement were 0.26 between palliative care specialists and oncologists, and 0.61 between palliative care specialists and nurses. Palliative care specialists’ assessments showed a moderate correlation with fatigue, dyspnea, anorexia, feeling of well-being, and symptom distress score measured by ESAS. The ECOG PS assessments by all three groups were significantly associated with survival (P<0.001), but the assessments by oncologists could not distinguish survival of patients with PS 2 from 3. Independent predictors of discordance in PS assessments between palliative care specialists and oncologists were the presence of an effective treatment option (odds ratio [OR] 2.39, 95% confidence interval [CI] 1.09-5.23) and poor feeling of well-being (≥4) by ESAS (OR 2.38, 95% CI 1.34-4.21). Conclusions: ECOG PS assessments by the palliative care specialists and nurses were significantly different from the oncologists. Systematic efforts to increase regular interdisciplinary meetings and communications might be crucial to bridge the gap and establish a best care plan for each advanced cancer patients.


2017 ◽  
Vol 26 (4) ◽  
pp. e12677 ◽  
Author(s):  
A. A. Martoni ◽  
S. Varani ◽  
B. Peghetti ◽  
D. Roganti ◽  
E. Volpicella ◽  
...  

1999 ◽  
Vol 17 (11) ◽  
pp. 3621-3630 ◽  
Author(s):  
Cheryl L. Nekolaichuk ◽  
Thomas O. Maguire ◽  
Maria Suarez-Almazor ◽  
W. Todd Rogers ◽  
Eduardo Bruera

PURPOSE: The purpose of this study was to examine the reliability of symptom assessments in advanced cancer patients under various conditions, including multiple raters (patients, nurses, and family caregivers), occasions, and symptoms. PATIENTS AND METHODS: The study sample consisted of 32 advanced cancer patients admitted to a tertiary palliative care unit. Symptom assessments were completed for each patient on two separate occasions, approximately 24 hours apart. On each occasion, the patient, the primary care nurse, and a primary family caregiver independently completed an assessment using the Edmonton Symptom Assessment System (ESAS). The ESAS is a nine-item visual analogue scale for assessing symptoms in palliative patients. The reliability of the assessments (r) was examined using generalizability theory. RESULTS: Three important findings emerged from this analysis. First, the analysis of individual symptom ratings provided a more meaningful representation of the symptom experience than total symptom distress ratings. Secondly, patients, nurses, and caregivers varied in their ratings across different patients, as well as in their ratings of shortness of breath, which may have been a result of individual rater variability. Finally, reliability estimates (r), based on a single rater and one occasion, were less than .70 for all symptoms, except appetite. These estimates improved substantially (r ≥ .70) for all symptoms except anxiety and shortness of breath, using three raters on a single occasion or two raters across two occasions. CONCLUSION: The findings from this study reinforce the need for the development of an integrated symptom assessment approach that combines patient and proxy assessments. Further research is needed to explore individual differences among raters.


2019 ◽  
Vol 28 (1) ◽  
pp. 87-98 ◽  
Author(s):  
Erin McKenzie ◽  
Liying Zhang ◽  
Stephanie Chan ◽  
Pearl Zaki ◽  
Yasmeen Razvi ◽  
...  

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