Comfort Level in Caregivers of Palliative Care Patients and Affecting Factors: What Should We Know?

2021 ◽  
pp. 003022282110147
Author(s):  
Kadriye Sayin Kasar ◽  
Yasemin Yildirim ◽  
Ulku Bulut

Caregivers are an important source of support for patients in palliative care. Comfort is an important concept in nursing care for both patients and their families, and nurses aim to increase comfort. The aim of the study was to determine the comfort level and influencing factors in caregivers of palliative care patients. The research sample consisted of 102 caregivers related to palliative care patients. The data were obtained with an Individual Information Form, the Edmonton Symptom Assessment Scale (ESAS) and the End of Life Comfort Scale (Caregiver/Family). The study was conducted in the palliative care clinic of Aksaray University Training and Research Hospital between October 2018 and April 2019. There was a significant relationship between the total comfort score of the caregivers and the patient's performance status, the caregivers' age, their economic situation, the length of the caregiving period and receiving help in care (social support) ( p < 0.05). Providing comfort is an important function and challenge for holistic nursing care, as comfort is a lifelong need in health and disease. Caregivers in the risk group should be aware of this issue and necessary precautions should be taken.

Author(s):  
Maisa Vitória Gayoso ◽  
Marla Andréia Garcia de Avila ◽  
Thays Antunes da Silva ◽  
Rúbia Aguiar Alencar

ABSTRACT Objective: To verify the association between the level of comfort of the caregiver and socio-demographic variables related to caregiving, and the patient’s functional status and symptoms. Method: Cross-sectional study with non-probabilistic intentional sample. The instruments Palliative Performance Scale (score 0 to 100%), Edmonton Symptom Assessment Scale (symptom scores from zero to ten) and Holistic Comfort Questionnaire (total score ranging from 49 to 294 and mean score from 1 to 6) were used. The relationship between comfort scores and independent variables was calculated by multiple linear regression. Results: Fifty informal caregivers participated in the study - 80% were female, 32% were 60 years old or older, 36% were children of the patient, 58% had paid work and 60% did not have help in the care. The mean overall comfort was 4.52 points. A better functional status of the patients was associated with higher levels of comfort of the caregivers. Older caregivers who received helped in the care activities presented higher comfort scores. Conclusion: The level of comfort of caregivers of cancer patients receiving palliative care was associated with socio-demographic variables and patients’ functional status and symptoms.


2011 ◽  
Vol 28 (7) ◽  
pp. 475-482 ◽  
Author(s):  
Patricia Claessens ◽  
Johan Menten ◽  
Paul Schotsmans ◽  
Bert Broeckaert

Palliative cancer patients are faced with multiple symptoms that threaten their quality of life. To manage these symptoms, a reliable and valid way of registration is crucial. In this study, the Edmonton Symptom Assessment Scale (ESAS) has been translated, modified, and tested on content, face, criterion, construct validity, and internal consistency for patients admitted to Flemish palliative care units. These aspects are tested in a descriptive, comparative, longitudinal study based on 3 convenience samples. The first consisted of 8 palliative care experts. The second sample checked the face validity and consisted of 4 patients, 5 family members, and 5 nurses. The last sample involved 23 patients admitted to 3 Flemish palliative care units. Heedful of the “new-wave” vision on validity, the translated and altered ESAS seemed a suitable instrument for the symptom assessment of patients with cancer admitted to a palliative care unit.


2019 ◽  
Vol 15 (1) ◽  
pp. e74-e83 ◽  
Author(s):  
Sriram Yennurajalingam ◽  
Zhanni Lu ◽  
Suresh K. Reddy ◽  
EdenMae C. Rodriguez ◽  
Kristy Nguyen ◽  
...  

PURPOSE: An understanding of opioid prescription and cost patterns is important to optimize pain management for patients with advanced cancer. This study aimed to determine opioid prescription and cost patterns and to identify opioid prescription predictors in patients with advanced cancer who received inpatient palliative care (IPC). MATERIALS AND METHODS: We reviewed data from 807 consecutive patients with cancer who received IPC in each October from 2008 through 2014. Patient characteristics; opioid types; morphine equivalent daily dose (MEDD) in milligrams per day of scheduled opioids before, during, and after hospitalization; and in-admission opioid cost per patient were assessed. We determined symptom changes between baseline and follow-up palliative care visits and the in-admission opioid prescription predictors. RESULTS: A total of 714 (88%) of the 807 patients were evaluable. The median MEDD per patient decreased from 150 mg/d in 2008 to 83 mg/d in 2014 ( P < .001). The median opioid cost per patient decreased and then increased from $22.97 to $40.35 over the 7 years ( P = .03). The median MEDDs increased from IPC to discharge by 67% ( P < .001). The median Edmonton Symptom Assessment Scale pain improvement at follow-up was 1 ( P < .001). Younger patients with advanced cancer (odds ratio [OR[, 0.95; P < . 001) were prescribed higher preadmission MEDDs (OR, 1.01; P < .001) more often in the earlier study years (2014 v 2009: OR, 0.18 [ P = .004] v 0.30 [ P = .02]) and tended to use high MEDDs (> 75 mg/d) during hospitalization. CONCLUSION: The MEDD per person decreased from 2008 to 2014. The opioid cost per patient decreased from 2008 to 2011 and then increased from 2012 to 2014. Age, prescription year, and preadmission opioid doses were significantly associated with opioid doses prescribed to patients with advanced cancer who received IPC.


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 35 (31_suppl) ◽  
pp. 124-124
Author(s):  
Diane Portman ◽  
Sarah Thirlwell ◽  
Kristine A. Donovan

124 Background: Appetite and weight loss are common in patients with advanced cancer and specialized cachexia clinics have been established to address these symptoms. Given the association between anorexia/cachexia and other adverse symptoms, these patients may also benefit from specialty level palliative care (PC). However, referral to outpatient specialty level PC is often delayed or does not occur. We sought to examine the prevalence of other factors associated with appetite and weight loss in patients with advanced cancer and the impact of a specialized cachexia clinic on identification and treatment of other PC needs. Methods: The records of patients referred by their Oncologist to the cachexia clinic of a cancer center from August 2016 to June 2017 were reviewed retrospectively. Subjects who had been referred to PC by their Oncologist were excluded. Patients had been assessed for symptom burden using the Edmonton Symptom Assessment Scale (ESAS-r). Patients identified with PC needs had been referred to the PC clinic for follow-up within 30 days after cachexia clinic consultation. Results: Thirty subjects were evaluated in the cachexia clinic (average age 68 years; 63% female). The predominant diagnosis was lung cancer (70%). An average of 6 symptoms per patient were in the moderate to severe range on ESAS, excluding appetite. Depression, fatigue and pain were most common. The average cachexia clinic total ESAS score was 51.61. Only 17% of patients had completed advance directives. Ninety-three % of patients were referred to PC and 68% were seen. The average number of PC visits was 2.79. Within the PC clinic, advance directive completion increased to 37%, goals of care discussion occurred with 50% and 17% received hospice referrals. At the most recent follow-up in the PC clinic, the average total ESAS score had decreased by 11.44 (22%) and all ESAS item scores were improved on average. Conclusions: The cachexia clinic proved a useful means to identify other PC needs and achieve effective PC referrals. We suggest this is proof of concept that specialty clinics can be a meaningful way to achieve an earlier entry point to comprehensive PC in patients who were not previously referred by their Oncologists.


2020 ◽  
pp. 1-6
Author(s):  
Miguel Julião ◽  
Maria Ana Sobral ◽  
Paula Calçada ◽  
Bárbara Antunes ◽  
Baltazar Nunes ◽  
...  

Abstract Objective Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation. Method The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL). Results Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%). Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively). Significance of results There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.


2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 8524-8524 ◽  
Author(s):  
B. El Osta ◽  
F. S. Braiteh ◽  
S. Reddy ◽  
H. El Osta ◽  
E. Bruera

8524 Background: There is limited information about the characteristics and outcomes of inpatient palliative care consults in cancer centers. Two mobile teams (MT) each with a physician, fellow, and a nurse, provide consultation to hospitalized patients (pts) with complex symptoms. Methods: We analyzed the pts characteristics and outcomes during a two-month period. The charts were reviewed for demographics, cancer data, reason for consultation, symptoms, interventions, and outcomes. Results: Sixty-one pts were analyzed. Pain was the main reason for a consult request in 46 pts (75%), delirium in 10 (16%), anxiety in 4 (7%) and constipation in 5 (8 %). Some pts had more than one reason. 56(92%) pts had metastatic disease, diagnosis for ≤1 year in 26 (42%) and ≤2 years in 44 (72%) (Median =17 months). The Edmonton Symptom Assessment Scale (ESAS), 0–10, is summarized in the table. We uncovered new issues at consultation, such as 20 pts (38%) screened positive for alcoholism with CAGE questionnaire and the 34 pts (56%) had clinical delirium. Features of opioids toxicity such as constipation (N=43;70%), confusion (N=35;57%) (Mean MMSE = 23 ± 5), hallucinations (N=21;34%), myoclonus (N=16;26%) and miosis (N=18;29%) were frequently identified. The MT interventions included imaging studies (23%), enema (43%), laxatives (49%), neuroleptics (54%), metoclopramide (39%), corticosteroids (25%). Half (N=30;50%) of the pts had opioid rotation and/or had counseling (N=27;46%). One out of two pts (N=30;49%) required transfer to the palliative care unit. Conclusions: Most pts had previously undiagnosed opioid toxicity, delirium, and other symptoms. Opioid toxicity occurred secondary to rapid opioid escalation, possibly linked to chemical coping, and psychosocial distress. The outcome of these pts improved by opioid rotation, adding laxatives, metoclopramide, neuroleptics, and steroids. [Table: see text] No significant financial relationships to disclose.


2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 64-64 ◽  
Author(s):  
Paola Langer ◽  
Pedro Emilio Perez-Cruz ◽  
Cecilia Carrasco Escarate ◽  
Pilar Bonati ◽  
Bogomila Batic ◽  
...  

64 Background: Improving symptom control during end of life (EOL) is a core goal of palliative care. When patients are not able to report their symptoms, caregivers (CG) report symptom intensity as surrogates. Data show that there is good agreement between patients and CG in reporting symptom intensity. However, little is known about factores that influence CGs’ accuracy. The aim of the study was to determine CG accuracy of advanced cancer patients’ symptoms and to identify CG factors that could modify it. Methods: In this prospective study, patients with advanced cancer enrolled in the National Program of Palliative Care at a public Hospital in Santiago, Chile and their CGs independently scored ten patients’ symptoms using the Edmonton Symptom Assessment Scale (ESAS). Correlation between patient and CG scores were estimated for each symptom. Differences between patient and CG scores were calculated for each symptom and were transformed into positive values. A continuous variable was created with the sum of all the differences as an indicator of caregiver overall accuracy, with smaller scores meaning better accuracy. CG depression, anxiety (HADS) and burden (ZARIT) were also assessed. Results: 36 patients and their CG were included in this preliminary analysis. Mean patient age was 64, 20 (56%) females, 13 (36%) had GI cancer, 7 (19%) lung cancer and 16 (45%) other. Mean caregiver age was 53, 25 (69%) female. We found positive correlations between patients’ and caregivers’ assessment of pain, fatigue, nausea, anorexia, dyspnea, depression and insomnia (r > 0.3 and p < .05 for each symptom). CG accuracy ranged between 10 and 44 points (mean 25, standard deviation 9) and was not associated with CG age, gender, depression, anxiety or burden. CG accuracy was negatively associated with CG worrying thoughts as assessed by one of the HADS questions (Coef -3.99, p = .015), meaning that CG were more accurate when their worrying thoughts were higher. This association remained significant when adjusted by CG depression, anxiety and burden. Conclusions: CG are more accurate in reporting patient symptoms when their levels of worrying thoughts are higher. This information may have implications in interpreting CG report during EOL.


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