OBJECTIVE: Many caregivers report finding positive meanings in their caregiving roles and activities. The positive aspects of caregiving (PAC) scale was designed to measure positive appraisals of caregiving. This study assessed the reliability and validity of the Korean version of the PAC for family caregivers of people with amyotrophic lateral sclerosis (ALS).
METHOD: The instrument's content and semantic equivalence were established using translation and back translation of the PAC. A convenience sample of 127 family caregivers of patients with ALS in Korea was recruited. Content, construct, and convergent validity of the Korean PAC were evaluated. Cronbach's a was used to assess reliability. This study used secondary data; the primary study received approval from the Institutional Review Board of H Hospital, from where data were collected. The consent forms did not mention the future use of data. Therefore, we have applied for approval regarding this study's protocol and exemption from informed consent.
RESULTS: The Cronbach's a was 0.92, and internal consistency was acceptable. Exploratory factor analysis supported the construct validity with a two-factor solution explaining 74.73% of the total variance. Regarding convergent validity, the Korean PAC score negatively correlated with caregiver burden and depression and positively with self-rated health status. We were unable to evaluate the suitability of the suggested structural dimensionality through confirmatory factor analysis. Furthermore, as we used secondary data, we could not assess retest reliability for the evaluation of the scale's stability.
SIGNIFICANCE OF RESULTS: The Korean PAC was found to be an applicable instrument with satisfactory reliability and validity and suitable for further use as a measure for positive appraisals of caregiving for family caregivers of people with ALS. It may be effective for measuring caregivers' psychological resources.
BACKGROUND: As the global population ages, palliative care is ever more essential to provide care for patients with incurable chronic conditions. However, in many countries, doctors are not prepared to care for dying patients. Palliative care education should be an urgent concern for all medical schools all around the world, including Latin America and Brazil. Advances in palliative care education require robust assessment tools for constant evaluation and improvement of educational programmes. Bandura's social cognitive theory proposes that active learning processes are mediated by self-efficacy and associated outcome expectancies, both crucial elements of developing new behaviour. The Self-Efficacy in Palliative Care (SEPC) and Thanatophobia Scales were developed using Bandura's theory to assess the outcomes of palliative care training.
OBJECTIVES: We aimed to translate and validate these scales for Brazilian Portuguese to generate data on how well doctors are being prepared to meet the needs of their patients.
DESIGN: Cross-sectional study.
SETTING: One Brazilian medical school.
PARTICIPANTS: Third-year medical students.
METHODS: The authors translated the scales following the European Organisation for Research and Treatment of Cancer's recommendations and examined their psychometric properties using data collected from a sample of 111 students in a Brazilian medical school in 2017.
RESULTS: The Brazilian versions of SEPC and Thanatophobia Scales showed good psychometric properties, including confirmatory factor analysis, replicating the original factors (factor range: 0.51-0.90), and acceptable values of reliability (Cronbach's alpha: 0.82-0.97 and composite reliability: 0.82-0.96). Additionally, the Brazilian versions of the scales showed concurrent validity, demonstrated through a significant negative correlation.
CONCLUSIONS: The Brazilian version of the scales may be used to assess the impact of current undergraduate training and identify areas for improvement within palliative care educational programmes. The data generated allow Brazilian researchers to join international conversations on this topic and educators to develop tailored pedagogical approaches.
Purpose: Patients' views on quality are important to improve person-centered palliative care. There is a lack of short, validated instruments incorporating patients' perspectives of the multidisciplinary palliative care services. The aim of this study was to develop a short form of the instrument Quality from the Patient's Perspective for Palliative Care (QPP-PC) and to describe and compare patients' perceptions of the subjective importance (SI) of care aspects and their perceptions of care received (PR).
Methods: A cross-sectional study was conducted in Norway including 128 patients (67% response rate) in four palliative care contexts. The QPP-PC, based on a person-centered theoretical framework, incorporating the multidisciplinary palliative care, comprises 4 dimensions; medical-technical competence, physical-technical conditions, identity-oriented approach and sociocultural atmosphere, 12 factors (49 items) and 3 single items. The instrument measures SI and PR. Development of the short form of the QPP-PC was inspired by previously published methodological guidelines. Descriptive statistics, paired t-tests, confirmatory factor analysis and Cronbach's a were used.
Results: The short form of QPP-PC consists of 4 dimensions, 20 items and 4 single items. Psychometric evaluation showed a root-mean-square error of approximation (RMSEA) value of 0.109 (SI). Cronbach's a values ranged between 0.64 and 0.85 for most dimensions on SI scales. Scores on SI and PR scales were mostly high. Significantly higher scores for SI than PR were present for the identity-oriented approach dimension, especially on items about information.
Conclusion: RMSEA value was slightly above the recommended level. Cronbach's a was acceptable for most dimensions. The short form of QPP-PC shows promising results and may be used with caution as an indicator of person-centered patient-reported experience measures evaluating the multidisciplinary palliative care for patients in a late palliative phase. However, the short version of QPP-PC needs to be further validated using new samples of patients.
Euthanasia is undoubtedly the protagonist of many of the debates around the end of life both among health staff and in the general population. Considering that nurses provide care for terminally ill patients and support families and patients in their final days, it is essential to know their attitudes towards euthanasia. The aims of the study were to adapt and validate the Attitude Towards Euthanasia scale to a Spanish context, to test the dimensionality and to estimate the reliability of the scale. A cross-sectional study was conducted with a non-probabilistic sample of Spanish health-workers of 201 in a University Hospital in Ciudad Real. A self-reported socio-demographic questionnaire and the Euthanasia Attitude Scale were used for data collection. The psychometric properties of the scale were assessed, including reliability and validity using an exploratory and confirmatory factor analysis. Cronbach’s alpha of the Attitude Towards Euthanasia scale was a = 0.827 and McDonald’s Omega = 0.903. The range of items of homogeneity was from 0.205 to 0.685. For the different exploratory factor analyses carried out, the Bartlett’s test of sphericity was p < 0.001 and the sample index value of Kaiser-Meyer-Olkin was over 0.802. in all cases. We present the factorial weights for three models: The first one assumes a unidimensional solution, the second model was composed by three factors and the third model was composed by four factors. In the confirmatory factor analysis, the three models presented an acceptable fit index. The Attitude Towards Euthanasia scale adaptation to a sample of Spanish health workers has shown, with some limitations, appropriate psychometric properties. There have been several differences between the original factorial solution. It would be necessary to replicate the study to reinforce the findings about the number of factors of the scale.
Purpose: To determine the efficacy of specifically targeted interventions in palliative care, sequential use of the Demoralization Scale (DS) could be a useful approach. This study’s main objective was to evaluate the weekly use of the DS for palliative care inpatients. Secondary objectives were the analysis of the DS, self-perceived strain, and personal benefits of the assessment.
Methods: Patients admitted to 3 palliative care units (PCUs) were tested for eligibility and asked to complete the DS weekly. Self-perceived strain was rated on a numeric scale (0–10). Open questions about strain and helpfulness of the survey were asked.
Results: Over 10 months, 568 patients were admitted to the PCUs; 193 patients were eligible. A total of 120 patients participated once, of whom only 41 (34.1%) participated at least twice. The mean self-perceived strain caused by the assessment was 1.53 at T1 (N = 117, SD = 2.27, max = 8).
Conclusions: While the single use of the DS in PCUs seems justified in view of the possibility to detect severe demoralization with overall low to moderate strain and self-perceived helpfulness for patients, the feasibility of the sequential use of the DS has to be regarded critically. Our study undermines the complexity of assessing changes in self-reported psychological phenomena with end-of-life patients at a PCU. The most limiting factors for participating twice were that patients were either discharged from hospital or declined further participation.
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: Glioma patients make frequent decisions regarding treatment and end-of-life care despite cognitive limitations. We evaluated the feasibility of incorporating the Macarthur Competence Assessment Tool for Treatment (MacCAT-T) to assess decision-making ability in glioma patients.
Methods: High-grade glioma patients were consented to an IRB-approved prospective study at one of three treatment decision time points. Patients completed the Montreal Cognitive Assessment (MoCA) and providers informally assessed patient decision-making ability based on neurologic examination. The MacCAT-T, designed to assess patient decision-making domains, was administered by a research assistant. MoCA, provider assessment, and MacCAT-T results were compared to determine whether the MacCAT-T provided additional information. To assess feasibility, we measured administration time and obtained qualitative patient feedback.
Results: Eleven patients (median age = 68 years, median Karnofsky Performance Status [KPS] = 80–90) were enrolled. MacCAT-T administration averaged 18.5 minutes. Ninety percent of patients reported “increased knowledge of their treatment options” after taking the MacCAT-T. Clinicians deemed 10 patients to possess sufficient decision-making ability, yet, 6 of them demonstrated impairments in reasoning on the MacCAT-T. Seven patients yielded discordant MOCA and MacCAT-T data, five patients with MOCA score =26 showed qualitative MacCAT-T impairments in Reasoning and five patients who scored <21 were within nonimpaired ranges for three of four decision-making domains.
Conclusion: MacCAT-T administration was feasible and informative to patients but findings were discordant from MOCA and informal provider assessments. The MacCAT-T may help in identifying mild Reasoning impairments related to patients' initial treatment decisions and should be studied further to determine its role in clinical practice.
The 41-item Comprehensive Assessment Tool for Cancer Caregivers (CNAT-C) is an English language survey for needs assessment developed and validated in South Korean cancer caregivers. The objective of this study was to validate both the English and a translated Chinese version of the CNAT-C in cancer caregivers in Singapore.
This was a cross-sectional survey where cancer caregivers completed the CNAT-C and World Health Organisation Quality-of-life BREF (WHOQOL-BREF) in English or Chinese. Cronbach's alpha was used to measure internal consistency. Convergent validity was assessed using Pearson correlation coefficients between CNAT-C scores and WHOQOL-BREF domains. For known groups validity, independent samples t-test was used to compare CNAT-C scores based on Karnofsky performance status.
There were 161 cancer caregivers - 80 answered the english version and 81 answered the Chinese version. For the English version, 33.8% were male and the lean age was 46.9 years. For the Chinese version, 27.2% were male and the mean age was 52.6 years. The total CNAT-C score and most domain scores showed good internal consistency, low to moderate convergent validity with WHOQOL-BREF domains and good known groups validity with performance status in both the English and Chinese versions. Domain 1 (health and psychological problems) in the Chinese version did not show convergent validity although there was evidence of known groups validity. Domain 5 (religious/spiritual support) also did not show validity in our study sample.
In summary, there was low to moderate convergent validity with the WHOQOL-BREF for both the English and translated Chinese versions. However, both language versions of CNAT-C showed good internal consistency and good known groups validity according to performance status, and both language versions of the CNAT-C can be used to assess the level of unmet needs for cancer caregivers in the Singapore context.
The Frommelt Attitude Toward Care of the Dying Scale (FATCOD) is designed to assess the attitudes of professionals and trainees toward caring for the dying patient and their family members. In this study the main aim is to adapt the FATCOD to a Spanish context (FATCOD-S). In addition, the relations between FATCOD-S, sociodemographic variables, emotional intelligence, and death attitudes have been analyzed. A sample of 669 Spanish nursing students from four Universities responded to a questionnaire. The exploratory factor analysis (EFA) concludes a structure composed of two significant factors. A confirmatory factor analysis (CFA) was carried out. The CFA supported a two-factor model. Students with past experience of death and those who had received training in palliative care scored significantly higher on both factors of the FATCOD-S (p < 0.01). The FATCOD-S is an effective and valid tool for measuring the attitudes of Spanish nursing students toward caring for patients at the end of life.
Interventions for bereaved children and families range from supportive counseling, designed to promote social connectedness and expression of feelings and thoughts about the deceased, to intensive trauma/grief-specific therapy, designed to ameliorate symptoms of posttraumatic stress disorder (PTSD) and depression. That said, professionals have few brief assessment instruments to match response and functioning to appropriate interventions. To expedite the screening and referral process for bereaved families, Brown, Goodman, and Swiecicki (2008) developed the PTSD and Depression Screener for Bereaved Youth, a 19-item measure of bereavement-related history and symptoms of PTSD and depression. The current study is a psychometric evaluation of the Screener for Bereaved Youth. Data were collected from 284 bereaved children, 6–17 years of age (M = 12.4; SD = 2.9). A factor analysis revealed distinct subscales for PTSD (eight items) and depression (four items). The PTSD and depression subscales showed both concurrent and discriminant validity. Endorsement of four items on either subscale was associated with meeting full criteria on more extensive measures of PTSD and depression. These findings are discussed with specific consideration to the multiple systems in which the measure could be used and applications to clinical services.
Context: Palliative care is underutilized, and research has neglected patient-level factors including attitudes that could contribute to avoidance or acceptance of palliative care referrals. This may be due in part to a lack of existing measures for this purpose.
Objectives: To develop and validate a 9-item scale measuring patient attitudes toward palliative care, comprised of 3 subscales spanning emotional, cognitive, and behavioral factors.
Methods: Data were collected online in three separate waves, targeting individuals with cancer (Sample 1: N=633; Sample 2: N=462) or non-cancer serious illnesses (Sample 3: N=225). Participants were recruited using ResearchMatch.org and postings on the websites, social media pages, and listservs of international health organizations.
Results: Internal consistency was acceptable for the total scale (a=.84) and subscales: emotional (a=.84), cognitive (as=.70), and behavioral (a=.90). The PCAS-9 was significantly associated with a separate measure of palliative care attitudes (ps<.001) and a measure of palliative care knowledge (ps<.004), supporting its construct validity in samples of cancer and non-cancer serious illnesses. The scale’s psychometric properties, including internal consistency and factor structure, generalized across patient subgroups based on diagnosis, other health characteristics, and demographics.
Conclusion: Findings support the overall reliability, validity, and generalizability of the PCAS-9 in serious illness samples and have implications for increasing palliative care utilization via clinical care and future research efforts.
BACKGROUND: Good communication with the family is a clinical imperative for high quality end-of-life (EOL) care in intensive care unit (ICU). Many interventions aim to improve EOL communication, and the choice of an outcome instrument has important implications for evaluating interventions. The purpose of this project is to search and review available instruments' psychometric properties and determine which best measures family-clinician communication in the ICU.
METHOD: A stepwise method was used by searching 2 databases (PsycInfo and Web of Science) to identify instruments and articles that provide information about scale psychometric properties.
INSTRUMENTS: Three instruments were identified, including Family Inpatient Communication Survey, Family Perception of Physician-Family Caregiver Communication, and Quality of Communication (QOC).
RESULTS: Reliability estimates were high (= 0.79) in all 3 instruments. The QOC’s convergent validity estimates exceed its discriminant validity values, and the QOC is an intervention-sensitive measure used to examine families’ treatment response in randomized control trials.
CONCLUSION: Quality of Communication is the most suitable instrument to measure family's perceptions of EOL communication in the ICU. Quality of Communication scores provide a deeper understanding of family-clinician communication and data about how to improve EOL care in ICUs.
INTRODUCTION: The prevention and relief of suffering are regarded as a goal at the end of life; therefore, suffering assessment at the end of life is essential. In this regard, we need instruments that allow us to evaluate this construct for gathering more evidence, as the assessment of suffering is increasingly used in research and the clinical setting. Many measures have been designed to assess this construct, and the selection of the most appropriate instrument is crucial. The aims of this systematic review are to (1) identify the measures assessing suffering in patients with advanced disease and their psychometric properties and (2) evaluate the methodological quality of studies on measurement properties.
METHODS AND ANALYSIS: The protocol of this systematic review was developed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols Guidelines. A systematic psychometric review of measures assessing suffering in patients with advanced disease and their psychometric properties will be carried out according to the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN). The search strategy will be performed following the Peer Review of Electronic Search Strategies. Searches will be conducted in Cumulative Index to Nursing and Allied Health Literature, Medline, PsycINFO, Cochrane Library, SciELO, Open Grey, Scopus, Web of Science and COSMIN database of systematic reviews, and it will be limited by time (1980-2018) and language (only literature in English and Spanish). Literature will be evaluated by two independent reviewers according to the COSMIN checklist, and measurement properties data of each study that meet the inclusion criteria will be scored independently by two researchers according to COSMIN quality ratings.
ETHICS AND DISSEMINATION: Ethical approval is not necessary for systematic review protocols. The results will be disseminated by publication in a peer-reviewed journal and presented at a relevant conference.
Purpose: Physician Orders for Life-Sustaining Treatment (POLST) form is a legal document for terminally ill patients to make medical decisions with physicians near the end-of-life. A multicenter prospective study was conducted to evaluate the feasibility of POLST administration in actual oncological practice.
Materials and Methods: Patients with terminal cancer, age ≥20, and capable of communicating were eligible. The primary endpoint was the completion rate of POLST. Data about physicians' or patients' barriers were also collected.
Results: From June to December 2017, 336 patients from seven hospitals were eligible. Median patient age was 66 years (range, 20 to 94 years); 52.7% were male; and 60.4% had poor performance status. Primay cancer sites were hepato-pancreato-biliary (26.2%), lung (23.2%), and gastrointestinal (19.9%). Expected survival duration was 10.6±7.3 weeks, with 41.2% receiving hospice care, 37.9% showing progression after cancer treatment, and the remaining patients were under active treatment (15.8%) or initially diagnosed with terminal cancer (5.1%). POLST forms were introduced to 60.1% of patients, and 31.3% signed the form. Physicians' barriers were reluctance of family (49.7%), lack of rapport (44.8%), patients' denial of prognosis (34.3%), lack of time (22.7%), guilty feelings (21.5%), and uncertainty about either prognosis (21.0%) or the right time to discuss POLST (16.6%). The patients' barriers were the lack of knowledge/understanding of POLST (65.1%), emotional discomfort (63.5%), difficulty in decision-making (66.7%), or denial of prognosis (14.3%).
Conclusion: One-third of patients completed POLST forms, and various barriers were identified. To overcome such barriers, social engagement, education, and systematic support might be necessary.
Purpose: To review studies pertaining to the reliability and validity of observational pain assessment tools for use with nonverbal patients at the end-of-life, a field of research not documented by previous systematic reviews.
Methods: Databases (PubMed, Embase, Epistemonikos, the Cochrane Library, and CINAHL) were systematically searched for studies from study inception to February 21, 2016 (update in May 9, 2018). Two independent reviewers screened study titles, abstracts, and full texts according to inclusion and exclusion criteria. Disagreements were resolved through consensus. Reviewers also extracted the psychometrics properties of studies of observational pain assessment instruments dedicated to a noncommunicative population in palliative care or at the end-of-life. A comprehensive quality assessment was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) to derive poor, fair, good or excellent ratings for the psychometric tests reported in each study.
Results: Four studies linked to 4 different tools met the inclusion criteria. Study populations included dementia, palliative care and severe illness in the context of intensive care. All the studies included in this review obtained poor COSMIN ratings overall.
Conclusions: At this point, it is impossible to recommend any of the tools evaluated given the low number and quality of the studies. Other analyses and studies need to be conducted to develop, adapt, or further validate observational pain instruments for the end-of-life population, regardless of the disease.
BACKGROUND: Patient-reported outcome (PRO) measurement is crucial to assess the benefit of psychotherapeutic interventions. Is repeated assessment of psychometric self-report data possible, as inpatient palliative care patients suffer from physical and psychological symptoms? What is the self-perceived strain caused by the assessment? Objective:The main objective of this study was to investigate the feasibility of a repeated comprehensive psychometric self-assessment of inpatient palliative care patients. Secondary objectives were the PROs of the psychometric assessment.
DESIGN: We conducted a prospective cohort study. Patients admitted to our palliative care unit (PCU) were reviewed for eligibility within 72 hours. They were asked for weekly self-reports regarding hope (HHI-D), well-being (FACIT-Sp), anxiety and depression (STADI), and quality of life (QoL; EORTC-QLQ-C-30 single item). The strain caused by the assessment was assessed by a numeric rating scale (0-10) and free comments.
RESULTS: Within 11 months, 219 patients were admitted to the PCU. In total, 92 patients were eligible. The most frequent exclusion criterion was "life expectancy <1 week." A total of 60 patients participated at the first point of measurement. The mean of self-perceived strain (Likert scale 0-10) due to the assessment was 1.44 (SD 1.99) at T1. Twenty-four patients participated twice. Here we found increased scores for physical well-being and QoL.
CONCLUSION: Repeated assessment of psychological conditions is feasible for 27.4% of inpatients at a German PCU. The most limiting factor is life expectancy of only days at admission to the PCU. However, the self-perceived strain is low.
Purpose: Decisional conflict is a significant and important barrier in end-of-life care planning, and it is often encountered in health professionals' discussions with patients and their families. Little is known about the measurement of decisional conflict, and existing measures are not suitable for all contexts. In this study, psychometric properties of the Decisional Conflict Scale, which was translated for the first time into Korean [Korean version of DCS (K-DCS)], were examined.
Methods: A sample of 273 community-dwelling elders was surveyed (mean age: 77.26 years; 80.2% women). Internal consistency reliability and stability reliability were tested by calculating Cronbach a and Pearson's correlation coefficients. Exploratory factor analysis and logistic regression analyses were performed to test validity.
Results: Reliability of the K-DCS was acceptable with Cronbach a =.87; test-retest correlation r = .76. Factor analysis showed a two-factor structure with nine items: informed/values clarity and uncertainty. Concordance between K-DCS and the four treatment directives was significant (kappa values =.78). Controlling for age and gender, those with decision implementation were more likely to implement their decisions on tube feeding (odds ratio = 5.15, p = .033) and hospice care (odds ratio = 2.83, p = .017).
Conclusion: The K-DCS appears to be a valid measure to evaluate decisional conflict about advance directives in community-dwelling Korean older adults. Further validation of the K-DCS is warranted, though caution should be exercised in using subscales because of differences in decisional contexts.
Background: Prognostic uncertainty is one barrier to engaging in goals-of-care discussions in chronic kidney disease (CKD). The surprise question ("Would you be surprised if this patient died in the next 12 months?") is a tool to assist in prognostication. However, it has not been studied in non-dialysis-dependent CKD and its reliability is unknown.
Study design: Observational study.
Setting & participants: 388 patients at least 60 years of age with non-dialysis-dependent CKD stages 4 to 5 who were seen at an outpatient nephrology clinic.
Predictor: Trinary (ie, Yes, Neutral, or No) and binary (Yes or No) surprise question response.
Outcomes: Mortality, test-retest reliability, and blinded inter-rater reliability.
Measurments: Baseline comorbid conditions, Charlson Comorbidity Index, cause of CKD, and baseline laboratory values (ie, serum creatinine/estimated glomerular filtration rate, serum albumin, and hemoglobin).
Results Median patient age was 71 years with median follow-up of 1.4 years, during which time 52 (13%) patients died. Using the trinary surprise question, providers responded Yes, Neutral, and No for 202 (52%), 80 (21%), and 106 (27%) patients, respectively. About 5%, 15%, and 27% of Yes, Neutral, and No patients died, respectively (P<0.001). Trinary surprise question inter-rater reliability was 0.58 (95% CI, 0.42-0.72), and test-retest reliability was 0.63 (95% CI, 0.54-0.72). The trinary surprise question No response had sensitivity and specificity of 55% and 76%, respectively (95% CIs, 38%-71% and 71%-80%, respectively). The binary surprise question had sensitivity of 66% (95% CI, 49%-80%; P=0.3 vs trinary), but lower specificity of 68% (95% CI, 63%-73%; P=0.02 vs trinary).
Limitations: Single center, small number of deaths.
Conclusions: The surprise question associates with mortality in CKD stages 4 to 5 and demonstrates moderate to good reliability. Future studies should examine how best to deploy the surprise question to facilitate advance care planning in advanced non-dialysis-dependent CKD.
Background: Patients with advanced cancer have reduced quality of life, which tends to worsen towards the end of life. We assessed the effect of early palliative care in patients with advanced cancer on several aspects of quality of life.
Methods: The study took place at the Princess Margaret Cancer Centre (Toronto, ON, Canada), between Dec 1, 2006, and Feb 28, 2011. 24 medical oncology clinics were cluster randomised (in a 1:1 ratio, using a computer-generated sequence, stratified by clinic size and tumour site [four lung, eight gastrointestinal, four genitourinary, six breast, two gynaecological]), to consultation and follow-up (at least monthly) by a palliative care team or to standard cancer care. Complete masking of interventions was not possible; however, patients provided written informed consent to participate in their own study group, without being informed of the existence of another group. Eligible patients had advanced cancer, European Cooperative Oncology Group performance status of 0-2, and a clinical prognosis of 6-24 months. Quality of life (Functional Assessment of Chronic Illness Therapy--Spiritual Well-Being [FACIT-Sp] scale and Quality of Life at the End of Life [QUAL-E] scale), symptom severity (Edmonton Symptom Assessment System [ESAS]), satisfaction with care (FAMCARE-P16), and problems with medical interactions (Cancer Rehabilitation Evaluation System Medical Interaction Subscale [CARES-MIS]) were measured at baseline and monthly for 4 months. The primary outcome was change score for FACIT-Sp at 3 months. Secondary endpoints included change score for FACIT-Sp at 4 months and change scores for other scales at 3 and 4 months. This trial is registered with ClinicalTrials.gov, number NCT01248624.
Findings: 461 patients completed baseline measures (228 intervention, 233 control); 393 completed at least one follow-up assessment. At 3-months, there was a non-significant difference in change score for FACIT-Sp between intervention and control groups (3·56 points [95% CI -0·27 to 7·40], p=0·07), a significant difference in QUAL-E (2·25 [0·01 to 4·49], p=0·05) and FAMCARE-P16 (3·79 [1·74 to 5·85], p=0·0003), and no difference in ESAS (-1·70 [-5·26 to 1·87], p=0·33) or CARES-MIS (-0·66 [-2·25 to 0·94], p=0·40). At 4 months, there were significant differences in change scores for all outcomes except CARES-MIS. All differences favoured the intervention group.
Interpretation: Although the difference in quality of life was non-significant at the primary endpoint, this trial shows promising findings that support early palliative care for patients with advanced cancer.
Background: Various scales have been used to assess palliative outcomes. But measurement can still be problematic and core components of measures have not been identified. This study aimed to determine the relationships between, and factorial structure of, three widely used scales among advanced cancer patients.
Methods: Patients were recruited who received home or hospital palliative care services in the south of England. Hope, quality of life and palliative outcomes were assessed by patients in face to face interviews, using three previously established scales - a generic measure (EQoL), a palliative care specific measure (POS) and a measure of hope (Herth Hope Index). Analysis comprised: exploratory factor analysis of each individual scale, and all scales combined, and confirmatory factor analysis for model building and validation.
Results: Of 171 patients identified, 140 (81%) consented and completed first interviews; mean age was 71 years, 54% were women, 132 had cancer. In exploratory analysis of individual means, three out of the five factors in the EQoL explained 75% of its variability, four out of the 10 factors in POS explained 63% of its variability, and in the Hope Index, nine out of the 12 items explained 69% of its variability. When exploring the relative factorial structure of all three scales, five factors explained 56% of total combined variability. Confirmatory analysis reduced this to a model with four factors - self-sufficiency, positivity, symptoms and spiritual. Removal of the spiritual factor left a model with an improved goodness of fit and a measure with 11 items.
Conclusion: We identified three factors which are important outcomes and would be simple to measure in clinical practice and research.