scholarly journals Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
Philip C Higgins ◽  
Holly Gwen Prigerson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Risk Indicator ◽  
Life Care ◽  
Trauma Symptoms ◽  
Prospective Longitudinal Study ◽  
Eol Care ◽  
Prospective Longitudinal

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

scholarly journals Assessment of the quality of end-of-life care: translation and validation of the German version of the “Care of the Dying Evaluation” (CODE-GER) - a questionnaire for bereaved relatives

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Annika Vogt ◽  
Stephanie Stiel ◽  
Maria Heckel ◽  
Swantje Goebel ◽  
Sandra Stephanie Mai ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
International Studies ◽  
Life Care ◽  
Next Of Kin ◽  
Evaluation Code ◽  
Perceived Strain ◽  
Care Of The Dying

Abstract Background International studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin. The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER). Methods Translation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10). Results Out of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low. Conclusion The results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research. Trial registration This study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

scholarly journals Caregiver perceptions of end-of-life care in patients with high-grade glioma

2020 ◽  
Vol 8 (2) ◽  
pp. 171-178
Author(s):  
John T Fortunato ◽  
Meredith Van Harn ◽  
Sameah A Haider ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
High Grade ◽  
Life Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

scholarly journals QOLP-14. CAREGIVER PERCEPTIONS OF END OF LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi200-vi200
Author(s):  
John Fortunato ◽  
Lonni Schultz ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
High Grade ◽  
Life Care ◽  
Coordination Of Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract INTRODUCTION Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective. METHODS Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale. RESULTS In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0–10 scale. CONCLUSIONS Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

Quality End-of-Life CarePatients’ Perspectives (DRAFT)

2018 ◽  
Author(s):  
Jesse A. Soodalter ◽  
Yael Schenker
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Sense Of Control ◽  
Life Care ◽  
Patient Centered ◽  
Term Care ◽  
Eol Care

This chapter summarizes Singer and colleagues’ 1999 “Quality End-of-Life Care: Patients’ Perspectives,” which investigates elements of quality end-of-life (EOL) care from patients’ perspectives. The study uses content analysis of previously conducted interviews with 126 dialysis and HIV patients and long-term care residents to identify five domains of quality EOL care: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. The authors compare these with three other, non-patient-derived taxonomies, finding the study’s domains to be simpler and more specific, less conceptually driven (e.g., “processes of care”), and more outcome-focused. This study pioneered patient-centered research into quality of EOL care, which has since expanded to many other populations

End-of-Life Care and Discussions in Japanese Geriatric Health Service Facilities: A Nationwide Survey of Managing Directors’ Viewpoints

2017 ◽  
Vol 35 (1) ◽  
pp. 83-91 ◽  
Author(s):  
Asako Kanoh ◽  
Yoshiyuki Kizawa ◽  
Satoru Tsuneto ◽  
Shoji Yokoya
Keyword(s):  
Health Service ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Care Workers ◽  
Care Facilities ◽  
Eol Care

Background: Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies. Aim: This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan. Methods: We conducted a nationwide cross-sectional survey by mailing questionnaires about EOL care and EOLDs to 3437 GHSF managing directors. The questionnaire was developed through a literature review and discussion among the researchers and experts. Descriptive statistics summarized the data. We also analyzed the factors related to GHSFs conducting EOLDs using Fisher exact tests. Results: The response rate was 20.7% (713 of 3437). Among the respondents, 75.2% (536 of 713) of GHSFs provided EOL care and 73.1% (521 of 713) conducted EOLDs. The most common reasons for difficulties in providing EOL care included the lack of EOL education for nurses and care workers, and their fear about caring for dying residents. End-of-life discussions were mostly initiated after the deterioration of a resident’s condition and were conducted with families by physicians. Statistically significant factors of GHSFs conducting EOLDs included providing EOL education for nurses and care workers, availability of private room for critically ill residents, emergency on-call doctors, and EOL care. Conclusion: Adequate practical staff education programs for EOL care including EOLDs may be crucial for quality of end-of-life care in aged care facilities.

scholarly journals Preferences for End-of-life Care among Terminal Cancer Patients in China: A Discrete Choice Experiment

2021 ◽  
Author(s):  
Anli Leng ◽  
Elizabeth Maitland ◽  
Siyuan Wang ◽  
Stephen Nicholas ◽  
Kuixu Lan ◽  
...  
Keyword(s):  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Life Extension ◽  
Terminal Cancer ◽  
Life Care ◽  
Patient Centered ◽  
Terminal Cancer Patients ◽  
Eol Care

Abstract Background Knowing terminal cancer patients’ treatment preferences will improve patient-centered health care, better inform surrogates and medical staff of patient preferences and enhance the quality of end-of-life (EoL) care. In China, little is known about terminal cancer patients’ preferences. We aimed to examines the preferences for EoL care of terminal cancer patients. Methods Data on 183 terminal cancer patients aged over 50 years old was collected by discrete choice experiment (DCE). Each DCE scenario described six attributes: hospitalization days,life extension, quality of life (QoL), adverse treatment reactions, place of death preference and out-of-pocket payments.Patient preferences were derived using a mixed logit model and the marginal willingness to pay (WTP) were estimated from the regression coefficients. Results Patients’ preferences for moderate survive time, better quality of life, lower risk of adverse reaction, home death and lower payments were all statistically significant in driving choice between treatment models. Extending life and QoL were the most important attributes. Patients were willing to pay RMB256,895.45 to improve QoL from a bad level to a very good level, significantly higher than their willingness to pay for half additional life year (RMB233,446.16) and one additional life year (RMB182,298.76). This indicates that patients were not willing to blindly pursue life extension and neglect the QoL,but preferred to trade off life extension for QoL. The predicted uptake of optimal end-of-life care scenario was 91.04%. Conclusions Our study contributes to the development of patient-centered preferences for end-of-life care models that improve advanced terminal patient’s care and provide empirical evidence for physicians and surrogates to operationalize end-of-life care trade-offs.

scholarly journals Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

2016 ◽  
Vol 176 (8) ◽  
pp. 1095 ◽  
Author(s):  
Melissa W. Wachterman ◽  
Corey Pilver ◽  
Dawn Smith ◽  
Mary Ersek ◽  
Stuart R. Lipsitz ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

Quality of end-of-life care for Vietnam-era Veterans: Implications for practice and policy

Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 100494
Author(s):  
Ann Kutney-Lee ◽  
Dawn Smith ◽  
Hilary Griffin ◽  
Daniel Kinder ◽  
Joan Carpenter ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Vietnam Era

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

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