Context: High-quality advance care planning (ACP) discussions are important to ensure patient receipt of goal-concordant care; however, there is no existing tool for assessing ACP communication quality.
Objectives: The objective of this study was to develop and validate a novel instrument that can be used to assess ACP communication skills of clinicians and trainees.
Methods: We developed a 20-item ACP Communication Assessment Tool (ACP-CAT) plus two summative items. Randomized rater pairs assessed residents' performances in video-recorded standardized patient encounters before and after an ACP training program using the ACP-CAT. We tested the tool for its 1) discriminating ability, 2) interrater reliability, 3) concurrent validity, 4) feasibility, and 5) raters' satisfaction.
Results: Fifty-eight pre/post-training video recordings from 29 first-year internal medicine residents at Mount Sinai Hospital were evaluated. ACP-CAT reliably discriminated performance before and after training (median score 6 vs. 11, P < 0.001). For both pre/post-training encounters, interrater reliability was high for ACP-CAT total scores (intraclass correlation coefficient or ICC = 0.83 and 0.82) and the summative items Overall impression of ACP communication skills (ICC = 0.73 and 0.80) and Overall ability to respond to emotion (ICC = 0.83 and 0.82). Concurrent validity was shown by the strong correlation between ACP-CAT total score and both summative items. Raters spent an average of 4.8 minutes to complete the ACP-CAT, found it feasible, and were satisfied with its use.
Conclusion: ACP-CAT provides a validated measure of ACP communication quality for assessing video-recorded encounters and can be further studied for its applicability with clinicians in different clinical contexts.
Background: patients with palliative needs often experience high symptom burden which causes suffering to themselves and their families. Depression and psychological distress should not be considered a “normal event” in advanced disease patients and should be screened, diagnosed, acted on and followed-up. Psychological distress has been associated with greater physical symptom severity, suffering, and mortality in cancer patients. A holistic, but short measure should be used for physical and non-physical needs assessment. The Integrated Palliative care Outcome Scale is one such measure. This work aims to determine palliative needs of patients and explore screening accuracy of two items pertaining to psychological needs.
Methods: multi-centred observational study using convenience sampling. Data were collected in 9 Portuguese centres. Inclusion criteria: =18 years, mentally fit to give consent, diagnosed with an incurable, potentially life-threatening illness. Exclusion criteria: patient in distress (“unable to converse for a period of time”), cognitively impaired. Descriptive statistics used for demographics. Receiving Operator Characteristics curves and Area Under the Curve for anxiety and depression discriminant properties against the Hospital Anxiety and Depression Scale.
Results: 1703 individuals were screened between July 1st, 2015 and February 2016. A total of 135 (7.9%) were included. Main reason for exclusion was being healthy (75.2%). The primary care centre screened most individuals, as they have the highest rates of daily patients and the majority are healthy. Mean age is 66.8 years (SD 12.7), 58 (43%) are female. Most patients had a cancer diagnosis 109 (80.7%). Items scoring highest (=4) were: family or friends anxious or worried (36.3%); feeling anxious or worried about illness (13.3%); feeling depressed (9.6%). Using a cut-off score of 2/3, Area Under the Curve for depression and anxiety items were above 70%.
Conclusions: main palliative needs were psychological, family related and spiritual. This suggests that clinical teams may better manage physical issues and there is room for improvement regarding non-physical needs. Using the Integrated Palliative care Outcome Scale systematically could aid clinical teams screening patients for distressing needs and track their progress in assisting patients and families with those issues.
AIM: The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure.
METHODS AND RESULTS: This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs.
CONCLUSION: The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.
Background: Measuring functional status in palliative care may help clinicians to assess a patient’s prognosis, recommend adequate therapy, avoid futile or aggressive medical care, consider hospice referral, and evaluate provided rehabilitation outcomes. An optimized, widely used, and validated tool is preferable. The Palliative Performance Scale Version 2 (PPSv2) is currently one of the most commonly used performance scales in palliative settings. The aim of this study is the psychometric validation process of a Polish translation of this tool (PPSv2-Polish).
Methods: two hundred patients admitted to a free-standing hospice were evaluated twice, on the first and third day, for test-retest reliability. In the first evaluation, two different care providers independently evaluated the same patient to establish inter-rater reliability values. PPSv2-Polish was evaluated simultaneously with the Karnofsky Performance Score (KPS), Eastern Cooperative Oncology Group (ECOG) Performance Status (ECOG PS), and Barthel Activities of Daily Living (ADL) Index, to determine its construct validity.
Results: A high level of full agreement between test and retest was seen (63%), and a good intra-class correlation coefficient of 0.85 (P < 0.0001) was achieved. Excellent agreement between raters was observed when using PPSv2-Polish (Cohen’s kappa 0.91; P < 0.0001). Satisfactory correlations with the KPS and good correlations with ECOG PS and Barthel ADL were noticed. Persons who had shorter prognoses and were predominantly bedridden also had lower scores measured by the PPSv2-Polish, KPS and Barthel ADL. A strong correlation of 0.77 between PPSv2-Polish scores and survival time was noted (P < 0.0001). Moderate survival correlations were seen between KPS, ECOG PS, and Barthel ADL of 0.41; - 0.62; and 0.58, respectively (P < 0.0001).
Conclusion: PPSv2-Polish is a valid and reliable tool measuring performance status in a hospice population and can be used in daily clinical practice in palliative care and research.
Background: Outcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties.
Methods: Patients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS).
Results: The sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = - 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms.
Conclusion: Czech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.
BACKGROUND: Frailty and palliative performance scores are 2 markers used in the measurement of functional decline in oncology and hospice care.
OBJECTIVE: To evaluate the frailty and palliative performance scores of a long-term care resident community and determine whether frailty and palliative performance scores can predict hospital readmissions (HR) and survivability of the long-term care resident.
METHODS: One hundred seventy-one long-term care residents from 2 urban facilities were evaluated for functional decline using the Clinical Frailty Scale (CFS) and Palliative Performance Scale (PPS). Sociodemographic, HR, and survival data for 1 year from study initiation were recorded.
RESULTS: The 171 long-term care residents, of lower socioeconomic status, primarily Medicare/Medicaid or dual-eligible, evaluated for functional decline using the CFS and PPS, had mean age of 73.1 years, 52.6% female, 94.7% African American, with 18.1% having HR and 87.1% surviving more than a year. There was a negative association between age and HR (P = .384). Among functional evaluation scales, CFS was positively associated with age (P = .013) but not PPS (P = .673). The residents scored 6.0 ± 1.2 on CFS and 52.8 ± 13.2 on PPS (%) with those residents readmitted to hospital having poorer outcomes. Readmission to hospital and survivability of the long-term care resident were both strongly associated with CFS (P = .001) and PPS (P = .001).
CONCLUSION: There is a strong association between the 2 markers used in the measurement of functional decline-Frailty measured by CFS and Palliative Performance Score measured by PPS. Frailty and palliative performance scores can strongly predict HR and survivability of the long-term care resident.
This study aimed to evaluate the validity and reliability of the Persian version of Death Anxiety Scale-Extended (DAS-E). A total of 507 patients with end-stage renal disease completed the DAS-E. The factor structure of the scale was evaluated using exploratory factor analysis with an oblique rotation and confirmatory factor analysis. The content and construct validity of the DAS-E were assessed. Average variance extracted, maximum shared squared variance, and average shared squared variance were estimated to assess discriminant and convergent validity. Reliability was assessed using Cronbach’s alpha coefficient (a = .839 and .831), composite reliability (CR = .845 and .832), Theta ( = .893 and .867), and McDonald Omega (O = .796 and .743). The analysis indicated a two-factor solution. Reliability and discriminant validity of the factors was established. Findings revealed that the present scale was a valid and reliable instrument that can be used in assessment of death anxiety in Iranian patients with end-stage renal disease.
Background: While the populations of children who can benefit from paediatric palliative care (PPC) have been broadly defined, identifying individual patients to receive PPC has been problematic in practice. The Paediatric Palliative Screening scale (PaPaS) is a multi-dimensional tool that assesses palliative care needs in children and families to facilitate timely referrals. This study evaluates its use to manage new referrals and ongoing review of patients receiving home-based PPC in Singapore.
Methods: Using a retrospective cohort study design, 199 patients admitted to receive PPC via clinician screening were scored using PaPaS. Eighty-four patients in two groups were scored again at one of two following milestones: one-year service continuation mark or point of discharge before a year. Accuracy measures were compared against clinical assessment.
Results: 96.98% of patients scored 15 and above on admission (indicating need for PPC). Patients assessed at following milestones were effectively stratified; those who continued to receive service after 1 year scored significantly higher (M = 19.23) compared to those who were discharged within a year (M = 7.86). Sensitivity and specificity for PaPaS were calculated at 82.54 and 100% respectively. Overall congruence with clinician-based decisions supports the utility of PaPaS as a screening tool in PPC. Recommendations to improve the scale further are proposed.
Conclusion: The PaPaS is a practical screening tool that signposts PPC needs within the clinical setting. This facilitates early referrals to PPC, without having to specify individual prognoses that are often uncertain. Other benefits include optimised continuity of care and implications for resource allocation.
The concepts of hope and its absence, hopelessness, are seen as crucial in palliative care for people with motor neurone disease. A primary measure in psychological research on hopelessness in people with motor neurone disease is the Beck Hopelessness Scale. This scale can be understood as being conceptually based on the philosophical standard account of hope, which understands hope as an intentional expectancy. This essay argues that this is a misconstruction of hopelessness in palliative care. Rather, pre-intentional hope is essential for palliative care of people with motor neurone disease. Pre-intentional hope enables the formation of intentional hopes and is intrinsically relational. Finally, it is argued that the absence of pre-intentional hope should not be subjected to psychiatric diagnosis, for example, in the form of demoralization disorder.
Advanced cancer patients are at an increased risk of developing depressive symptoms, which can lead to major depressive disorder and a poor quality of life. It is important that symptoms of depression to be addressed early and frequently throughout the trajectory of the disease process. Depression is underdiagnosed and therefore undertreated in advanced cancer patients. Clinicians often fail to perform regular depression screenings as recommended by the National Comprehensive Cancer Network. Depressive symptoms are overlooked as they tend to overlap with the effects of disease progression and cancer treatments. Patients' complaints of anorexia, chronic pain, and sleep disturbances do not necessarily trigger practitioners to perform depression screenings. African Americans with advanced cancer are at a higher risk of developing depression, but may not identify as depressed due to the stigma of mental health in the black community. Screening tools such as the 2- and 9-item Patient Health Questionnaire, Beck Depression Inventory II, Hospital Anxiety and Depression Scale, and the Distress Thermometer and Problem List are common brief instruments that can screen for depression. Providing early symptom relief of depressive symptoms through psychotherapy and pharmacologic interventions will benefit the patient, family, and caregivers while improving the quality of life throughout the trajectory of the illness.
The Edmonton Symptom Assessment System (Revised) (ESAS-r) contains 9 questions pertaining to symptoms/well-being. It is a standardized patient-reported assessment instrument, but inconsistently used in palliative care. Thus, a problem exists in knowledge translation regarding routine use of the ESAS-r in palliative practice. The objective was to understand clinicians' perspectives on the use of the ESAS-r in palliative care in hospitals and at home. Qualitative focus groups (n = 14 with 46 clinicians) and interviews (n = 24) elicited views regarding use of the ESAS-r in palliative practice. Interpretive description was used as a general approach to this qualitative analysis focused on understanding clinicians' views. Palliative clinicians presented multiple perspectives of the ESAS-r pertaining to their (1) underlying values, (2) disparate purposes, and (3) incommensurate responses toward use in daily practice. Benefits and challenges supported diversity within these themes, highlighting divergence among perspectives and complexity of integrating a standardized tool in patient care. Integration of the ESAS-r in palliative care requires (1) educational support for developing competence; (2) consideration of clinicians' existing, heterogeneous beliefs regarding the use of standardized assessment instruments; and (3) Consultation with multidisciplinary practitioners about optimal ways that ESAS-r results can be used in a person-centered approach to palliative care.
In order to explore frailty subtypes and find their associated risk factors, we conducted cross-sectional surveys of 5,341 seniors aged 60 and over in China using the Frailty Index (FI) scale. We identified four frailty subtypes, namely multi-frail, cognitive and functionally frail, psychologically frail and physiologically frail. Old age and low education level were the common risk factors among the four subtypes. Being widowed, divorced or unmarried was a risk factor for multi-frail, cognitive and functionally frail and psychologically frail, and male sex was a protective factor against cognitive and functionally frail and psychologically frail subtypes. Having a harmonious relationship with family was a protective factor against multi-frail, and fewer visits to the elderly by their children was a risk factor for psychologically frail. Dissatisfaction with their housing was a risk factor for cognitive and functionally frail, psychologically frail and physiologically frail, and a pension being the main source of income was a risk factor for cognitive and functionally frail and psychologically frail. Exercising every day was a protective factor against multi-frail and cognitive and functionally frail, and a lower level of physical activity was a risk factor for all four frailty subtypes. Our findings confirm the heterogeneity of frailty and suggest that different frail elderly individuals need more targeted care interventions.
Background: Hospital Emergency Departments (EDs) experience high presentation rates from older adults residing in Aged Care Facilities (ACFs), yet very few intervention studies have addressed the care needs of this population group. We designed and implemented a nurse-led model of care for older adults from ACFs, and determined its impact on patient outcomes.
Methods: This 12-month pre–post intervention study was conducted during 2013–2014, with follow-up during 2015–2016. Participants included all older adults presenting from ACFs to the ED of Mater Hospital Brisbane (MHB), Australia. Frailty status was determined using the Clinical Frailty Scale (CFS).
Results: All participants were frail (n = 1130), with 19% severely frail, 55% very-severely frail, and 26% terminally ill. The intervention resulted in several improvements in patient outcomes, including significant reductions in ward admissions and 28-day representation rates.
Conclusion: Significant improvements can be achieved by integration of an acute frail older person service into an ED.
Après avoir essayé les divers outils disponibles, une maison de soins palliatifs de Québec de 15 lits souhaitait améliorer l'évaluation du risque de développer des lésions de pression, en tenant compte des recommandations d'Agrément Canada. En 2016, elle a donc développé puis implanté un formulaire combinant l'Echelle de Braden, 22 facteurs de risque identifiés lors d'une revue de littérature et l'Echelle de Performance Palliative (EPP) (traduction de Palliative Performance Scale) (Anderson, Downing, Hill, Casorso et Lerch, 1996 ; Victoria Hospice Society, 2006).
Dans un souci d'appuyer les pratiques cliniques basées sur les meilleures données scientifiques, et compte tenu de l'absence de données de validation au sujet des différentes composantes du formulaire dans le contexte des soins palliatifs, un projet de recherche a été développé afin d'évaluer la pertinence clinique de ce formulaire.
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Background: Symptoms (e.g., pain, shortness of breath, and fatigue) at the end of life (EoL) are common. Although symptoms can contribute to poor quality of life at the EoL, much remains unknown regarding their prevalence and correlates in home hospice care.
Objectives: To determine the prevalence and correlates of caregiver-reported symptoms in home hospice patients during the last week before discharge using the Edmonton Symptom Assessment Scale (ESAS).
Design: This is a cross-sectional study measuring perceived patient symptoms using caregiver proxy data. Bivariate and multivariate analyses were conducted to examine patient and caregiver characteristics associated with ESAS scores.
Setting/Subjects: Subjects were from an urban nonprofit home hospice organization.
Measurements: Symptoms were measured using the ESAS.
Results: The mean ESAS score was 51.2 (SD ±17.4). In bivariate analyses, higher perceived symptom score was associated with younger patient age (p < 0.001), younger caregiver age (p < 0.001), having a cancer diagnosis (p = 0.006), and lower caregiver comfort level managing symptoms (p < 0.001). Regression model analyses showed that younger patient age (p = 0.0009, p = 0.0036) and lower caregiver comfort level managing symptoms (p = 0.0047, p < 0.0001) were associated uniquely with higher symptom scores.
Conclusions: Multiple symptoms of high severity were perceived by caregivers in the last week on home hospice. Patient age and caregiver comfort level in managing symptoms were associated with higher symptom scores. Further work is needed to improve management and treatment of symptoms in this care setting.
The aim of the present study is to validate the Self-Efficacy in Palliative Care Scale (SEPC) in Spanish nursing professionals and students, to describe their levels of self-efficacy, and to determine the influencing factors. A validation study and a cross-sectional descriptive study were carried out, with the data analysed using contrast tests and multiple linear regression; 552 nurses and 440 nursing students participated. The Spanish version consists of 23 items and has a high degree of reliability (a = 0.944). Confirmatory factor analysis revealed one additional factor (i.e., management of psychosocial and spiritual aspects) in comparison to the original scale. Contrast tests revealed that the mean SEPC score was higher in professionals than in students (p < 0.001) and that the professionals who had higher levels of self-efficacy were older (p < 0.001), had more previous training (p < 0.001), and had more experience in end-of-life care (p = 0.001). The linear analysis results confirm a significant association between age and previous training in end-of-life care. The Spanish version of the SEPC is a reliable tool for both nursing professionals and students. The level of self-efficacy of both groups is moderate and is influenced by age, experience, and training in end-of-life care.
Background: Few studies have examined meaning in life, a novel existential outcome, in patients with advanced cancer across countries.
Objectives: We examined differences in meaning in life across 5 countries and identified factors associated with meaning in life.
Methods: This is a pre-planned secondary analysis of a prospective longitudinal multicenter observational study of patients with advanced cancer. Meaning in life was assessed using a validated scale which examined four domains of meaning: values, purpose, goals, and reflection. The total score ranged from 8 to 32, with a higher score indicating greater meaning in life.
Results: Among 728 patients, the median meaning in life score was 25/32 (interquartile range 23, 28). There was no significant difference in the total meaning in life score among 5 countries (P = 0.11), though there were differences in domain sub-scores. In the univariate analysis, patients with higher intensity of physical symptoms by ESAS score (pain, fatigue, drowsiness, dyspnea, insomnia), depression, anxiety, spiritual pain, and financial distress had significantly lower meaning in life. However, patients with higher levels of education, who were married, and who had higher optimism had significantly higher meaning in life. In the multivariate analysis, higher total meaning in life scores were significantly associated with greater optimism (multivariate estimate = 0.33, p < 0.001), lower depression (- 0.26, < 0.001), spiritual pain (- 0.19, < 0.001), and financial distress (- 0.16, < 0.001).
Conclusion: Country of origin was not a determinant of meaning in life. However, meaning in life was significantly associated with optimism, depression, spiritual pain, and financial distress, underscoring the multidimensional nature of this construct and potential opportunities for improvement in addressing meaning in life of patients with advanced cancer.
Objective: Home-visit nurses play a key role in supporting the spouses of terminal cancer patients and encouraging positive perspectives of the caregiving experience. This study aimed to develop a scale to support nurses in self-assessing their practice around this important role.
Design: Cross-sectional questionnaire study.
Setting:The Home Nursing Scale to Help Spousal Caregivers (HNS-HSC) questionnaire for self-assessment of home-visit nursing to spouses was developed based on interviews with spouses and literature reviews.
Participants: Overall, 1500 home-visit nurses nationwide who had experience in supporting spousal caregivers and their patients in the predeath and postdeath periods were approached for participation.
ain outcome measure: Planned exploratory and confirmatory factor analyses were used to assess the underlying dimensions of the HNS-HSC; Cronbach’s a was used to determine the reliability. The Japanese version of Frommelt Attitude Toward Care of the Dying Scale Form B (FAT-COD-B-J) and Grief Care scale were administered to assess convergent and discriminant validity.
Results: Exploratory and confirmatory factor analyses identified 26 items on five factors: ‘helping spouses plan their futures’ ‘helping caregivers alleviate any regrets regarding their care’, ‘understanding the bond between a couple’, ‘providing support for anticipatory grief’, and ‘addressing spousal caregivers’ emotions after their spouses’ deaths’. The final model showed acceptable goodness-of-fit indices. The Cronbach’s a for the entire scale was 0.949 and exceeded 0.822 for each factor. The correlation coefficient with the FAT-COD-B-J, which served as an external validation, was 0.35. The correlation coefficients for the three grief care scales were 0.64, 0.45 and 0.72, respectively.
Conclusions: This scale is a reliable and valid tool for visiting nurses to self-assess their knowledge, skills and practice around helping spousal caregivers. By using this scale, it is expected to change nursing practice in pursuit of improving quality of life of spouses.
Background: The Patient Dignity Inventory (PDI) is based on an empirically-driven dignity model that has been developed and used for clinically assessing the various sources of dignity-related distress. In a recent review, it received the highest score as a useful instrument in both practice and research in palliative care. The PDI has been adapted to and validated for use in various countries, but not yet Sweden.
Aims: To translate the PDI into Swedish, including cultural adaptation for clinical use.
Methods: A multi-step process of translation, negotiated consensus, expert group discussion (n=7: four invited experts and three researchers) and cognitive interviewing (n=7: persons with palliative care needs).
Findings: Discussion, by the expert reviewers, of both linguistic and cultural issues regarding the content and readability of the translated Swedish version resulted in revisions of items and response alternatives, focusing mainly on semantic, conceptual, and experiential equivalence. A pilot version for cognitive interviews was produced. The analysis of data showed that most of the items were judged to be relevant by the persons with palliative care needs.
Conclusion: The process of translation and adaptation added clarity and consistency. The Swedish version of the PDI can be used in assessing dignity-related distress. The next step will be to test this Swedish version for psychometric properties in a larger group of patients with palliative care needs before use in research.
PURPOSE: To develop and pilot the DD-14 scale, a 14-indicator scale based on the Nursing Outcome Classification "Dignified life closure" (1307).
METHODS: Sixteen experts selected 14 indicators for Spanish populations. Six care home nurses piloted the scale in 50 terminal patients without cognitive impairment. Factorial and reliability analyses were performed and correlations were determined with dependency, symptomatology, and palliative care quality.
FINDINGS: DD-14 demonstrated high reliability (α = 0.916) and a stable factorial structure. It was not influenced by sex, age, or disease and correlated positively with the Barthel index (r = .622; p = .00) and negatively with the Palliative Outcome Scale (r = -.542;p = .00).
CONCLUSIONS: DD-14 is a useful scale for evaluating end-of-life dignity.
IMPLICATIONS FOR NURSING PRACTICE: This instrument could be useful in planning nursing interventions.