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.
Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.
AIMS: Develop and psychometrically assess the Palliative Nursing Care Quality Scale (PNCQS, escala de Calidad del Cuidado Enfermero Paliativo, CCEP, in Spanish). An interview-based qualitative study (1) was conducted to verify construct validity evidence, with psychometric properties of reliability and validity verified by two quantitative studies (2 & 3).
DESIGN: Quantitative instrumental, correlational, and cross-sectional study.
METHODS: Study 1 was carried out with 10 key informants. For Study 2, a sample of 103 nursing professionals was obtained and 176 nurses from palliative care resources in Spain participated in Study 3. Data were collected between May 2017 - May 2018.
RESULTS: Evidence of adequate reliability (internal consistency) and validity was found. The confirmatory factor model yielded a single latent factor for the 20 items, with adequate goodness-of-fit indices. The convergent validity data showed that the highest correlations were with the Dedication subscale of the Utrecht Work Engagement Scale and the Personal Growth subscale of Psychological Well-being, with values of 0.35 and 0.34, respectively (p < 0.01 in both cases).
CONCLUSION: The scale shows good psychometric properties, with high internal consistency and evidence of internal and convergent validity.
IMPACT: Proposing a valuable instrument which identifies good nursing in different areas of palliative care while also establishing quality indicators to guide nursing practice entails the recognition of autonomy in care. The resulting work tool can be used to systematize the assessment of nursing care in a process of open and continuous improvement.
Objective: This study aimed to develop an assessment tool measuring comprehensive interdisciplinary competence in end-of-life care (EoLC) and investigate its content, construct validity, reliability, and their correlates.
Method: Items of the Comprehensive End-of-Life Care Competence Scale (CECCS) were developed according to a comprehensive core competence framework in EoLC and refined by a multi-disciplinary panel of experts. The psychometric properties were further tested through region-wide surveys of self-administered questionnaires completed by health and social care professionals in Hong Kong.
Results: Participants comprised social workers, nurses, physicians, and allied health care professionals (445 participants in 2016, 410 in 2017, and 523 in 2018). Factor analysis validated the construct of the questionnaire which encompassed 26 items describing EoLC core competences in seven domains with satisfactory internal reliability (confirmatory factor analysis: 2/df = 3.12, GFI = 0.85, TLI = 0.93, CFI = 0.94, RMSEA = 0.07; Cronbach's alphas ranged from 0.89 to 0.97): overarching value & knowledge, communication skills, symptom management, psychosocial and community care, end-of-life decision-making, bereavement care, and self-care. Higher perceived levels in these competences were correlated with a higher level of job meaningfulness and satisfaction (r ranged from 0.17 to 0.39, p < 0.01) and correlated with lower perceived stress (r ranged from –0.11 to –0.28, p < 0.05). Regression analysis found that age and work involvement in EoLC were positively associated with the perceived competences in all domains; professionals working in hospices reported higher levels of competence than workers in other settings; social workers showed lower perceived competences in symptom management, but higher levels in bereavement care than other health care professionals.
Significance of results: The validity and internal reliability of CECCS were demonstrated. The levels of perceived competences working in EoLC were significantly associated with professionals’ job-related well-being. Practically, there is still room for improvement in comprehensive competences among health and social care workers in Hong Kong.
Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS).
Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking.
Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs.
Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2.
Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.
Objective: Measuring the satisfaction of family caregivers regarding the palliative care provided to their family members is very important for quality improvement in the palliative care system. The aim of this study was to test the psychometric properties (i.e., reliability and validity) of the FAMCARE-2 Scale: Thai Translation for measuring family caregiver satisfaction.
Methods: A forward-backward translation process was utilized to produce the 17-item FAMCARE-2 Scale: Thai Translation. The questionnaire and the demographic data form were hand-delivered to the primary family caregivers of 66 palliative care patients of the inpatient wards at Maharaj Nakorn Chiang Mai Hospital, Faculty of Medicine, Chiang Mai University, on the patient discharge date. Internal consistency reliability testing of the FAMCARE-2 Scale: Thai Translation was assessed by calculating the Cronbach's alpha coefficient. Factor analysis was used to test construct validity.
Results: The FAMCARE-2 Scale: Thai Translation showed a high level of internal consistency (Cronbach's alpha coefficient of 0.94) and an item-to-total correlation coefficient of 0.13-0.77. Factor analysis of FAMCARE-2 revealed a four-factor structure: management of physical symptoms and comfort, patient care and sharing information, symptoms and side effects, and family and patient support.
Conclusions: The FAMCARE-2 Scale: Thai Translation was found to be a valid psychometric tool for measuring family caregiver satisfaction within the Thai context of palliative care.
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.
Background: Few measures capture the complex symptoms and concerns of those receiving palliative care.
Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its validity, reliability and responsiveness to change.
Design: Concurrent, cross-cultural validation study of the Integrated Palliative care Outcome Scale – both (1) patient self-report and (2) staff proxy-report versions. We tested construct validity (factor analysis, known-group comparisons, and correlational analysis), reliability (internal consistency, agreement, and test–retest reliability), and responsiveness (through longitudinal evaluation of change).
Setting/participants: In all, 376 adults receiving palliative care, and 161 clinicians, from a range of settings in the United Kingdom and Germany
Results: We confirm a three-factor structure (Physical Symptoms, Emotional Symptoms and Communication/Practical Issues). Integrated Palliative care Outcome Scale shows strong ability to distinguish between clinically relevant groups; total Integrated Palliative care Outcome Scale and Integrated Palliative care Outcome Scale subscale scores were higher – reflecting more problems – in those patients with ‘unstable’ or ‘deteriorating’ versus ‘stable’ Phase of Illness (F = 15.1, p < 0.001). Good convergent and discriminant validity to hypothesised items and subscales of the Edmonton Symptom Assessment System and Functional Assessment of Cancer Therapy–General is demonstrated. The Integrated Palliative care Outcome Scale shows good internal consistency (a = 0.77) and acceptable to good test–retest reliability (60% of items kw > 0.60). Longitudinal validity in form of responsiveness to change is good.
Conclusion: The Integrated Palliative care Outcome Scale is a valid and reliable outcome measure, both in patient self-report and staff proxy-report versions. It can assess and monitor symptoms and concerns in advanced illness, determine the impact of healthcare interventions, and demonstrate quality of care. This represents a major step forward internationally for palliative care outcome measurement.
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.