Background: To culturally adapt and validate the Integrated Palliative care Outcome Scale to European Portuguese.
Methods: Multi-centred observational study with 2 assessment points. Data were collected in nine centres using consecutive sampling. All patients were screened for eligibility. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness, read, write and understand Portuguese. Translation and back translation with independent native speakers blind to the original measure created a Portuguese version, which was culturally adapted using cognitive interviews. For psychometric testing, the COSMIN checklist was followed. Reliability and content validity were assessed for patient and staff versions. Construct and criterion validity were tested for patient version.
Results: 1703 individuals were screened between July 1st 2015 and February 2016, 135 (7.9%) were included. Mean age was 66.8 years (SD 12.7), 58 (43%) were female. Most patients (109; 80.7%) had a cancer diagnosis. Cronbach’s alpha showed good internal consistency, 0.657 for patient, 0.705 for staff versions. Intraclass correlation coefficient testing reproducibility revealed very good reliability, 0.794–0.950 for patient and 0.456–0.925 for staff versions. There was good content validity and significant results for construct validity. Physical symptoms were better detected by females. IPOS could discriminate: practical issues in different places of care, based on cancer diagnosis, physical and emotional symptoms based on life expectancy both for patient and professional dimensions, physical and emotional symptoms based on phase of illness, for professional dimensions, and physical symptoms from the patients’ viewpoint.
Conclusions: The Portuguese IPOS is a reliable and valid measure.
Background: The predictive value of the prognostic tool for patients with advanced cancer is uncertain in mainland China, especially in the home-based palliative care (HPC) setting. This study aimed to compare the accuracy of the Palliative Prognostic Index (PPI), the Performance Status–Based Palliative Prognostic Index (PS-PPI), and the Chinese Prognosis Scale (ChPS) for patients with advanced cancer in the HPC setting in mainland China.
Methods: Patients with advanced cancer admitted to the hospice center of Yuebei People’s Hospital between January 2014 and December 2018 were retrospectively calculated the scores according to the three prognostic tools. The Kaplan-Meier method was used to compare survival times among different risk groups. Receiver operating characteristic curve analysis was used to assess the predictive value. The accuracy of 21-, 42- and 90-day survival was compared among the three prognostic tools.
Results: A total of 1863 patients were included. Survival time among the risk groups of all prognostic tools was significantly different from each other except for the PPI. The AUROC of the ChPS was significantly higher than that of the PPI and PS-PPI for 7-, 14, 21-, 42-, 90-, 120-, 150- and 180-day survival (P < 0.05). The AUROC of the PPI and PS-PPI were not significantly different from each other (P > 0.05).
Conclusions: The ChPS is more suitable than the PPI and PS-PPI for advanced cancer patients in the HPC setting. More researches are needed to verify the predictive value of the ChPS, PPI, and PS-PPI in the HPC setting in the future.
Background: This study examined phenomenological manifestations of delirium in advanced cancer patients by examining the factor structure of the Delirium Rating Scale-Revised-98 (DRS-R-98) and profiles of delirium symptoms.
Methods: Ninety-three patients with advanced cancer admitted to inpatient palliative care units in South Korea were examined by psychiatrists using the DRS-R-98 and the Confusion Assessment Method (CAM). The factor structure of the DRS-R-98 was examined by exploratory structural equation modelling analysis (ESEM) and profiles of delirium were examined by latent profile analysis (LPA).
Results: CAM-defined delirium was present in 66.6% (n = 62) of patients. Results from the ESEM analysis confirmed applicability of the core and noncore symptom factors of the DRS-R-98 to advanced cancer patients. LPA identified three distinct profiles of delirium characterizing the overall severity of delirium and its core and noncore symptoms. Class 1 (n = 55, 59.1%) showed low levels of all delirium symptoms. Class 2 (n = 17, 18.3%) showed high levels of core symptoms only, whereas Class 3 (n = 21, 22.6%) showed high levels of both core and noncore symptoms except motor retardation.
Conclusions: Clinical care for delirium in advanced cancer patients may benefit from consideration of the core and noncore symptom factor structure and the three distinct phenomenological profiles of delirium observed in the present study.
Objectives: 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 visits. A total of 71 patients were evaluable, with a median age of 65 years, male (62%) and 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 = .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 < .001).
Conclusions: In conclusion, advanced cancer patients with ESAS = 5 may benefit from outpatient palliative cancer care. Pre-screening of patient-reported symptoms using ESAS can be useful for identifying unmet palliative care needs in advanced cancer patients.
Context: The Cancer Dyspnea Scale (CDS) is a self-reported multidimensional tool used for the assessment of dyspnea, a subjective experience of breathing discomfort, in cancer patients. The scale describes dyspnea using three distinct factors: physical, psychological and discomfort at rest.
Objective: to cross-cultural validate the Italian version of CDS (CDS-IT) and examine its content validity, feasibility, internal consistency and construct validity in patients with advanced cancer.
Methods: A cross-sectional study was conducted. CDS-IT was forward-backward translated, and its content was validated among a group of experts. Cronbach’s a coefficients was used to assess the internal consistency. Construct validity was examined in terms of structural validity through confirmatory factor analysis and convergent validity with Dyspnea Visual Analogue Scale (VAS-D) through the Pearson’s correlation coefficient (r). Cancer Quality of life (EORTC QLQ-C15-PAL) and Italian Palliative Outcome Scale (IPOS) were also tested.
Results: The CDS-IT was cross-cultural validated and showed satisfactory content validity. A total of 101 patients (mean age: 76 (SD 12), 53% of female) were recruited in palliative care settings. CDS-IT reported a good internal consistency in the total score and its factors (a=0.74-0.83). The factor analysis corresponded acceptably, but not completely with the original study. CDS-IT strongly correlated with VAS-D (r=0.68) and moderately with IPOS and EORTC QLQ-C15-PAL (r=0.33-0.36, respectively).
Conclusions: The study findings supported the cross-cultural validity of the CDS-IT. Its feasibility, internal consistency and construct validity are satisfactory for clinical practice. The CDS-IT is available to healthcare professionals as a useful tool to assess dyspnea in cancer patients.
OBJECTIVE: The aim of this study was to understand the attitudes of front-line clinical nurses toward hospice care in the fight against the COVID-19 pandemic, to provide a source of reference for hospice care education and training in hospitals treating patients with COVID-19.
METHOD: Front-line nurses from a designated COVID-19 hospital in Wuhan, China, participated. Participants completed the Chinese versions of the General Information Questionnaire, the Frommelt Attitudes Toward Care of the Dying Scale, the Jefferson Scale of Empathy, and the General Self-Efficacy Scale.
RESULTS: A total of 149 questionnaires were included in the analysis. The median total hospice care attitudes score was median 102.00 (interquartile range, 95.5-120.50). The nurses' attitudes toward hospice care were significantly associated with their age, knowledge of hospice care, level of empathy, and self-efficacy.
CONCLUSION: The attitudes of front-line nurses toward hospice care need to be improved. Hospital departments should establish an effective public health emergency strategy, provide training to increase front-line nurses' knowledge and practical experience of hospice care, cultivate nurses' empathy, and enhance their sense of self-efficacy, in order to improve the quality of hospice care for patients and their families.
The Core Bereavement Items (CBI) is a commonly used measure that assesses core grief and bereavement experiences. Although previous psychometric testing has been conducted, no studies have assessed its use specifically aimed at adults aged 50 and older or for those who lost a loved one who was hospice care. This is critical, as losses and additional obstacles in bereavement compound throughout the aging process. The present study investigated reliability, content validity, and internal structure of the CBI in bereaved adults aged 50 and older whose loved one died while in hospice care (N = 205). Associations based on age, marital status, and relationship with the died patients were consistent with preexisting research. Results of a Cronbach a reliability test found that the CBI has excellent reliability in this population. Further, content validity was established based on the judgment of subject matter experts. Exploratory factor analysis supported a 1-factor structure, with all items loading as General Grief Experiences. Based on this analysis, the CBI is a valid and reliable tool when used with adults aged 50 and older.
CONTEXT: Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.
OBJECTIVES: To explore clinical aspects of palliative sedation in recent prospective studies.
METHODS: Systematic review conducted following PRISMA guidelines and registered at PROSPERO. PubMed, CINAHL, Cochrane, Medline and Embase were searched (January 2014-December 2019), combining "sedation", "palliative care", "prospective". Article quality was assessed.
RESULTS: Ten prospective articles were included, involving predominantly cancer patients. Most frequently reported refractory symptoms were delirium (41-83%), pain (25-65%), and dyspnoea (16-59%). In some articles, psychological and existential distress were mentioned (16-59%). Only a few articles specified the tools used to assess symptoms. Level of sedation assessment tools were: the Richmond Agitation Sedation Scale, Ramsay Sedation Scale, Glasgow Coma Scale and Bispectral Index Monitoring. The palliative sedation practice shows an underlying need for proportionality in relation to symptom intensity. Midazolam was the main sedative used. Other reported medications were phenobarbital, promethazine and anaesthetic medication- propofol. The only study that reported level of patient's discomfort as a palliative sedation outcome showed a decrease in patient discomfort.
CONCLUSIONS: Assessment of refractory symptoms should include physical evaluation with standardised tools applied and interviews for psychological and existential evaluation by expert clinicians working in teams. Future research needs to evaluate the effectiveness of palliative sedation for refractory symptom relief.
Frailty assessed using Clinical Frailty Scale (CFS) is a good predictor of adverse clinical events including mortality in older people. CFS is also an essential criterion for determining ceilings of care in people with COVID-19. Our aims were to assess the prevalence of frailty in older patients hospitalised with COVID-19, their sex and age distribution, and the completion rate of the CFS tool in evaluating frailty.
Methods: Data were collected from thirteen sites. CFS was assessed routinely at the time of admission to hospital and ranged from 1 (very fit) to 9 (terminally ill). The completion rate of the CFS was assessed. The presence of major comorbidities such as diabetes and cardiovascular disease was noted.
Results: A total of 1277 older patients with COVID-19, aged = 65 (79.9 ± 8.1) years were included in the study, with 98.5% having fully completed CFS. The total prevalence of frailty (CFS = 5) was 66.9%, being higher in women than men (75.2% vs. 59.4%, p < 0.001). Frailty was found in 161 (44%) patients aged 65–74 years, 352 (69%) in 75–84 years, and 341 (85%) in =85 years groups, and increased across the age groups (<0.0001, test for trend).
Conclusion: Frailty was prevalent in our cohort of older people admitted to hospital with COVID-19. This indicates that older people who are also frail, who go on to contract COVID-19 may have disease severity significant enough to warrant hospitalization. These data may help inform health care planners and targeted interventions and appropriate management for the frail older person.
A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients.
Nursing students may feel unprepared to manage the care of dying individuals and may experience anxiety and fear related to death and dying. Preparing nursing students for this situation can help them provide quality care to dying patients. This study aimed to examine the end-of-life care values and behaviors and death attitudes of senior nursing students. In examining these variables, the Values and Behaviors of Intensive Care Nurses for End-of-Life Instrument and the Death Attitude Profile-Revised Scale were used. It was found that the students developed positive attitudes and behavior towards end-of-life care, and that they believed death to be a natural part of life and there is life after death. Students who felt that the information they received during their education was partially sufficient were more likely to have negative death attitudes. It can be recommended that teaching strategies in the education of the nursing students be developed.
Objectives: Comparison of the effects of reflexology and relaxation on pain, anxiety, and depression, and quality of life (QoL) of patients with cancer.
Design: A stratified random sample was selected, using an experimental design.
Location: An outpatient Palliative Care Unit in Attica, Greece.
Subjects: 88 patients suffering with cancer.
Interventions: The sample was randomly divided into two equal groups, a reflexology and a relaxation group. The number of interventions for both groups was six 30-min weekly sessions.
Outcome measures: The Greek Brief Pain Inventory (G-BPI) was used to measure pain, the Greek Hospital Anxiety and Depression Scale for screening anxiety and depression, and finally the Short Form Health Survey was used to measure QoL. Measurements of the above tools were taken three times in both groups as follows: preintervention, at fourth and at sixth week of intervention.
Results: Anxiety and depression for both groups exhibited a statistically significant decrease during the observation period (p < 0.001, 2 > 0.25) but at the sixth week, there was a more significant decrease in the reflexology group compared with the relaxation group (p = 0.062, 2 = 0.044 vs. p = 0.005, 2 = 0.096 for anxiety), (p = 0.006, 2 = 0.094 vs. p = 0.001, 2 = 0.138 for depression). QoL physical and mental component measurements were significantly greater for the reflexology group (p < 0.001, 2 = 0.168 and p = 0.017, 2 = 0.071, respectively). The baseline-to-sixth week G-BPI measurements were markedly decreased for the reflexology group (p = 0.207, 2 = 0.020).
Conclusions: Both interventions, relaxation and reflexology, seemed to be effective in decreasing anxiety and depression in patients with cancer. However, reflexology was found to be more effective in improving QoL (physical component) and to have a greater effect on pain management than relaxation.
Background: Prolonged grief disorder (PGD) is a new mental health disorder included in the WHO ICD-11 however, the operationalization of the disorder criteria still needs to be empirically validated, particularly in different cultural contexts. Here we provide a preliminary validation study of the new International Prolonged Grief Disorder Scale (IPGDS) that serves to be the first self-report questionnaire directly based on the ICD-11 PGD and contains culturally adapted items.
Methods: In addition to core symptom items new culturally specific items were developed in two phases. Phase 1: key informant interviews with 10 German-speaking and 14 Chinese experts in grief and mental health, followed by a focus group with four bereaved German-speaking participants. Phase 2: 214 German-speaking and 325 Chinese bereaved participants completed self-report questionnaires.
Results: Phase 1 resulted in 19 potential culturally relevant items (e.g. feeling stuck in grief). Phase 2 exploratory factor analysis confirmed the one-dimensional nature of the IPGDS, additionally the 32-item scale revealed two factors (core grief and culturally specific symptoms). Psychometric analysis revealed strong internal consistency, concurrent validity and criterion validity.
Limitations: The German-speaking and Chinese samples significantly differed in terms of several demographic variables including age, gender and type of loss.
Conclusions: This preliminary validity study confirms that the IPGDS is a valid and reliable measure of the new ICD-11 PGD guidelines. This is the first scale of disordered grief to contain both core items and culturally specific supplementary items and aims to improve the clinical utility of the ICD-11 narrative approach.
This study aimed to elucidate the predictors and the effects of path modeling on the knowledge, attitude, and practice toward do-not-resuscitate (DNR) among the Taiwanese nursing staff. This study was a cross-sectional, descriptive design using stratified cluster sampling. We collected data on demographics, knowledge, attitude, and practice as measured by the DNR inventory (KAP-DNR), Mindful Attention Awareness Scale, General Self-Efficacy Scale, and Dispositional Resilience Scale. Participants were 194 nursing staff from a medical center in northern Taiwan in 2019. The results showed that participation in DNR signature and education related to palliative care were significant positive predictors of knowledge toward DNR. The DNR predictors toward attitude included DNR knowledge, mindfulness, self-efficacy, dispositional resilience, and religious belief of nurses. Generally, the critical predictors of DNR practice were DNR attitude, dispositional resilience, and male nurses. In path modeling, we identified that self-efficacy, dispositional resilience, master's degree, and religious belief directly influenced practice constituting DNR. Based on the findings of this study, we propose that nurses should improve their self-efficacy and dispositional resilience through training programs. Encouraging staff to undertake further education and have religious beliefs can enhance the practice of DNR and provide better end-of-life care.
OBJECTIVE: Practitioners are often reluctant to engage in conversations that acknowledge patient's health concerns. This can affect patient and family carer psychological well-being. The Attitude to Health Change scales, adapted from the validated Adult Attitude to Grief scale, may have potential to address the psychological impact of illness and facilitate conversations in palliative care. To explore how health and social care professionals experience using the Attitude to Health Change Scales within hospice settings.
METHODS: Qualitative focus groups with practitioners currently using the Attitude to Health Change scales in three UK hospices. Two researchers conducted the interviews, developed the thematic framework and independently coded the transcripts using a framework analysis approach.
RESULTS: Three focus groups (n = 21 practitioners). The scale was used to assess and reassess levels of vulnerability and resilience to identify the need for support and to facilitate structured in-depth conversations. Factors that influenced scale implementation included the following: practitioner personal comfort and training; patient and family carer willingness to engage with the scales and having a practitioner "champion" within the organisation.
CONCLUSION: This exploratory work has identified the potential value of the scales for assessment and to facilitate conversations. Further research needs to incorporate the views of patients and family carers.
Settings/subjects: Surrogate decision makers for deceased stroke patients in a population-based study.
Measurements: The primary outcome was the validated 10-item family version of the QEOLC scale. The univariate association between prespecified patient and surrogate factors and dichotomized QEOLC score (high: 8–10, low: 0–7) was explored with logistic regression fit using generalized estimating equations.
Results: Seventy-nine surrogates for 66 deceased stroke cases were enrolled (median patient age: 76, female patient: 53%, Mexican American patient: 59%, median time from stroke to death: seven days, median surrogate age: 59, and female surrogate: 72%). The overall QEOLC was generally high (median 8.3, quartiles 6.1, 9.6) although several individual items had a high proportion ([about] 30%–50%) of surrogates who felt that the questions did not apply to the patient's situation. No hypothesized factors were associated with QEOLC score, including demographics, stroke type, location/timing of death, advance directives, health literacy, or understanding of patient wishes.
Conclusions: Surrogates reported generally high QEOLC. Although this finding is encouraging, modifications to the QEOLC may be needed in stroke as some surrogates were unable to provide a valid response for certain items.
Background: One of the most difficult and stressful tasks faced by health science students is having to cope with death and dying due to the emotional burden of the same. Furthermore, the moral, ethical and professional values of future health professionals are influenced by the cultures where they live.
Purpose: This study sought to compare and analyze the perception on end of life among a sample of health science students in Spain and Bolivia.
Methods: A descriptive, cross-sectional and multi-centric study. The total sample (548 students) was comprised of three groups: medical, nursing and physiotherapy students, of whom 245 were from Bolivia, and 303 were Spanish students. The measurement instruments used were the Bugen’s Coping with Death Scale and the Death Self-Efficacy Scale by Robbins.
Results: No statistically significant differences were observed between Spanish and Bolivian students (t (546) = - 0.248, p = 0.804) using the Bugen scale. This implies that there are no differences between the perception of both groups of students and that both groups use similar strategies to cope with death. Additionally, the beliefs and attitudes of both groups were similar, with Bolivian students presenting a trend towards improved scores. No differences were found between Spain and Bolivia in the results obtained on the Robbins scale, with students from both countries displaying similar skills and capabilities for facing death.
Conclusions: The beliefs on death of health science students from Spain and Bolivia were not affected by the respective cultures, type of degree studied, students’ age, or the country of origin, however, we found that students in Bolivia value death as something more natural than their Spanish counterparts.
To appropriately prepare students for this topic, education on coping with death and dying must be included within the university curriculum.
This study was conducted to examine the importance of the concept of a good death and the contributing factors from the perspectives of family caregivers of advanced cancer patients. This descriptive and cross-sectional study, conducted with 182 family caregivers, were collected using a questionnaire form and the “Good Death Scale”. The number and percentage distribution, multiple linear regression were used evaluation of data. The total score of the Good Death Scale was 62.65 ± 4.60. The factors contributing to the importance of the concept of a good death were determined as the presence of chronic disease; the type of treatment given to the patient; the presence of another family member who was previously diagnosed with cancer; the presence of a family member who has died of cancer and previously caregiving to a terminally ill family member. This study revealed that the concept of a good death is seen as very important.
BACKGROUND: Only a few studies have been done focusing on the quality of life (QoL) of patients with multiple sclerosis (MS) as well as their family members. The aim of our research was to determine the factors that influence the QoL of MS patients in advanced stage of disease and their caregivers.
METHODS: The sample of the cross-sectional study included 153 patients with MS and 74 caregivers. QoL was measured using the PNDQoL questionnaire (Progressive Neurological Diseases Quality of Life), and the severity of illness was assessed through the following scales: EDSS (Expanded Disability Status scale), PPS (Palliative Performance Scale), and ADL (Activity Daily Living).
RESULTS: The following predictors of the global QoL of the MS patients were identified - age, EDSS, symptom burden, daily care, emotional functioning, and spiritual_nonreligion functioning (R2 = 0.569; F = 32.900; p < 0.001). The following predictors of the global QoL of caregivers were identified - age, emotional functioning, spiritual_nonreligion functioning, patient's QoL, and feeling of care (R2 = 0.431; F = 18.690; p < 0.001).
CONCLUSION: Appropriate intervention should be directed particularly at older patients and caregivers who have faced the disease for longer time and at patients without any partner. Supporting the emotional and social well-being and mitigating the burden caused by symptoms of the patients as well as caregivers can improve the QoL of both groups.
Objectives: The objectives of this study are to investigate how many advanced cancer patients became unconscious or non-communicative after pharmacological treatment for delirium, and to explore whether existing delirium assessment tools can successfully evaluate its severity at the end of life.
Methods: This was a secondary analysis of a registry study that examined the efficacy and safety of antipsychotics for advanced cancer patients with delirium. A total of 818 patients were recruited from 39 specialized palliative care services in Japan. The severity of delirium was measured using the Richmond Agitation-Sedation Scale-Palliative care version, the Delirium Rating Scale-Revised-98 (DRS-R-98), and the Nursing Delirium Screening Scale (Nu-DESC) on Day 3. Data from 302 patients with motor anxiety with an Agitation Distress Scale score =2 on Day 0 were analyzed for this study. The patients were categorized into four treatment response groups: complete response (CR: no agitation and fully communicative), partial response (PR: no/mild agitation and partially communicative), unconscious/non-communicative (UC), and no change (NC).
Results: On Day 3, 29 (10%; 95% confidence intervals (CI), 7-13) and 2 (1%; 95% CI, 0-2) patients became unconscious and non-communicative, respectively. Forty-four patients were categorized as CR, 97 as PR, 31 as UC, and 96 as NC. The scores of the DRS-R-98 and Nu-DESC in the UC group were rated higher than patients in the NC group were.
Conclusions: A considerable number of cancer patients with delirium became unconscious or non-communicative. Existing delirium assessment tools may be inappropriate for measuring the severity of delirium in end-of-life.