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BACKGROUND: Pain assessment is challenging in cognitively impaired (CI) patients due to inadequate self-report skills and observational ratings are an alternative. The Doloplus-2 is developed for pain assessment in the CI and rates somatic, psychomotor and psychosocial behaviours as indicators of pain. AIMS: To translate the Doloplus-2 into Norwegian, to test the Doloplus-2 with regard to criterion validity and to obtain the administrators' evaluation of the clinical performance of the Doloplus-2. METHODS: Nurses at three nursing homes, in collaboration with two research assistants, administered the Doloplus-2 to 59 patients with dementia. The results were compared against experienced clinicians' pain ratings. Regression analyses were performed to explore each different item's contribution to the total pain score. The administrators also completed a debriefing questionnaire. RESULTS: The instrument was translated according to international guidelines. Regression analyses demonstrate that the Doloplus-2 score accounts for 62% (R2) of the expert score and that the four most informative items could explain 68% of the expert score. Analyses of the different Doloplus-2 items indicate that facial expressions explain most and social life least of the expert's pain ratings. The administrators reported that Doloplus-2 was helpful and easy to administer, but questioned the validity of the psychosocial domain. CONCLUSIONS: The Norwegian Doloplus-2 demonstrates satisfactory criterion validity and clinical value in this pilot study. However, the content of the instrument needs a general re-evaluation, especially with regard to the psychosocial items. [ABSTRACT FROM AUTHOR]

The most commonly encountered clinical conditions presenting with cognitive failure (CF) are delirium, dementia and amnestic disorders. Of these, delirium is probably the most prevalent in palliative care, and it is potentially reversible. Thus, improvement in diagnostics seems warranted. The objectives of this review were to examine the methods for assessment of CF and delirium in palliative care. Twenty-two studies were reviewed: 64% were published in 2000 or later. Twelve reports focused on delirium, six on CF, while the remaining four assessed confusion (2), hallucinations and general psychological morbidity. Median sample size was 100 (20393). Ten different instruments were used: The Mini Mental State Exam was used in 13 studies. Five studies were validation reports of new or existing instruments. The term CF is an imprecise description of a loss in one or more of the cognitive functions. The interchangeable use of CF as a description of specific diagnoses should be avoided, as this contributes to prevalence rates that are not representative. Assessment tools that discriminate between the different diagnostic entities presenting with CF should be used in future studies. [ABSTRACT FROM AUTHOR]

Fatigue is a major complaint among advanced cancer patients. Several instruments are available for measuring fatigue. The EORTC QLQ-C30 is one of the most frequently used health-related quality of life (HRQOL) instruments, and it includes a three-item fatigue subscale. Limited knowledge exists about the validity, performance and sensitivity of EORTC QLQ-C30 fatigue scale as compared with a fatigue-specific instrument. The aim of the present study was to validate the EORTC QLQ-C30 fatigue scale (FA) against the Fatigue Questionnaire (FQ). The FQ is frequently used and was developed to measure fatigue in both cancer and noncancer populations. The FQ measures physical (PF, seven items) and mental fatigue (MF, four items). The study population included two different cohorts: A) patients with advanced metastatic cancer included in a prospective randomized study of palliative radiotherapy (n = 238); B) patients with leukaemia and malignant lymphoma curatively treated with stem-cell transplantation and high-dose chemotherapy (n = 128). The analysis demonstrated that the FA correlated higher with the PF scale (r = 0.67-0.75) as compared with the MF scale (r = 0.49-0.61). The item scale correlations between FA items and the PF scale were consistently higher than between FA items and the MF scale. A factor analysis including all the items within the FA and the FQ identified two factors. All FA items loaded on a PF factor (0.70-0.85). A floor/ ceiling effect, indicating a high number of respondents with lowest, respectively, highest scores was observed more frequently in the FA as compared with the FQ. The PF discriminated better between diagnostic groups with different levels of fatigue than the FA did. In conclusion, the EORTC QLQ-C30 fatigue scale is measuring physical fatigue. A floor/ ceiling effect seems to appear for the EORTC QLQ-C30 fatigue scale. The validity of the EORTC QLQ-C30 fatigue scale is to be questioned for use in palliative care patients. In studies with fatigue as a defined end point, a domain-specific instrument should, therefore, be added. [ABSTRACT FROM AUTHOR]

In this study, cancer patients' characteristics associated with death in nursing homes were explored. The study sample included 395 cancer patients who had participated in a trial of palliative care, 260 (66%) patients died in hospital, 80 (20%) at home and 55 (14%) in nursing homes. Health-related quality of life was prospectively recorded using the EORTC QLQ-C30 questionnaire. Death in nursing home was associated with greater age, not living with spouse and poor performance status. Patients dying in nursing homes reported severe functioning impairments and more fatigue and appetite loss compared with those dying elsewhere. The association between death in nursing homes and poor physical, role, cognitive and social functioning remained significant when sociodemographic and medical differences were taken into account. Further research on frail elderly cancer patients is warranted to improve their care, to evaluate the appropriateness of nursing home placement and for future planning of palliative care services. [ABSTRACT FROM AUTHOR]

Background: Depressive symptoms are prevalent in patients with advanced cancer, sometimes of a severity that fulfil the criteria for a major depressive episode., Aim: The aim of this study was to investigate how the item on depression in the Edmonton Symptom Assessment System with a 0-10 Numerical Rating Scale performed as a screener for major depressive episode. A possible improved performance by adding the Edmonton Symptom Assessment System-Anxiety item was also examined., Design: An international cross-sectional study including patients with incurable cancer was conducted. The Edmonton Symptom Assessment System score was compared against major depressive episode as assessed by the Patient Health Questionnaire-9. Screening performance was examined by sensitivity, specificity and the kappa coefficient., Setting: Patients with incurable cancer (n = 969), median age 63 years and from eight nationalities provided report. Median Karnofsky Performance Status was 70. Median survival was 229 days (205-255 days)., Results: Patient Health Questionnaire-9 major depressive episode was present in 133 of 969 patients (13.7%). Edmonton Symptom Assessment System-Depression screening ability for Patient Health Questionnaire-9 major depressive episode was limited. Area under the receiver operating characteristic curve was 0.71 (0.66-0.76). Valid detection or exclusion of Patient Health Questionnaire-9 major depressive episode could not be concluded at any Edmonton Symptom Assessment System-Depression cut-off; by the cut-off Numerical Rating Scale ⩾ 2, sensitivity was 0.69 and specificity was 0.60. By the cut-off Numerical Rating Scale ⩾ 4, sensitivity was 0.51 and specificity was 0.82. Combined mean ratings by Edmonton Symptom Assessment System-Depression and Edmonton Symptom Assessment System-Anxiety revealed similar limited screening ability., Conclusion: The depression and anxiety items of the Edmonton Symptom Assessment System, a frequently used assessment tool in palliative care settings, seem to measure a construct other than major depressive episode as assessed by the Patient Health Questionnaire-9 instrument., (© The Author(s) 2016.)

The objective of this study was to review the literature on depression in palliative cancer care in order to identify which assessment methods and classification systems have been used in studies of depression. Extensive electronic database searches in PubMed, CancerLit, CINAHL, PsychINFO, EMBASE and AgeLine as well as hand search were carried out. In the 202 included papers, 106 different assessment methods were used. Sixty-five of these were only used once. All together, the Hospital Anxiety and Depression Scale (HADS) was the most commonly used assessment method. However, there were regional differences and while the HADS dominated in Europe it was quite seldom used in Canada or in the USA. Few prevalence and intervention studies used assessment methods with an explicit reference to a diagnostic system. There were in total few case definitions of depression. Among these, the classifications were in general based on cut-off scores (77%) and not according to diagnostic systems. The full range of the DSM-IV diagnostic criteria was seldom assessed, i.e. less than one-third of the assessments in the review took into account the duration of symptoms and 18% assessed consequences and impact upon patient functioning. A diversity of assessment methods had been used. Few studies classified depression by referring to a diagnostic system or by using cut-off scores. Evidently, there is a need for a consensus on how to assess and conceptualize depression and related conditions in palliative care.

At present, there is no universally accepted cancer pain assessment tool for use in palliative care (PC). The European Palliative Care Research Collaborative (EPCRC), therefore, aims to develop an international consensus-based computerised pain assessment tool. As part of this process, we have performed (1) a literature review on pain assessment tools for use in the PC and (2) an international expert survey to gain information on the relevant dimensions for pain assessment in PC. 230 publications were identified, only six met the inclusion criteria. Three further articles were identified through manual searching, totalling 11 different pain assessment tools. Nine tools were multidimensional. Pain intensity was assessed in seven, using various numerical/verbal rating scales (NRS/VRS); five tools focused on pain management. Three publications did not identify the rationale for the need to develop a new tool, and the selection procedure for items/dimensions was not described in six tools. Patient and/or professional expert groups were involved in the development of five tools and only two tools were extensively validated or cross-culturally tested. Thirty-two experts (71%) completed the expert survey and identified 'intensity', 'temporal pattern', 'relief/exacerbation', 'pain quality' and 'location' as the five most relevant dimensions. Most preferred assessment of 'pain intensity' was by NRS rather than VRS. Time windows extending 24 h were regarded as less relevant. Development of PC pain assessment tools seems to be a continuous process, which does not adhere to systematic guidelines, thus does not contribute to a universally accepted tool. No tool contained all relevant dimensions as defined by the experts. Many tools focused on particular dimensions, suggesting that specific research interests may drive the tool development process. Extensive literature reviews, expert and patient input and clinical studies are a needed approach in the development of a new consensus-based pain assessment tool.

Background: Physical decline is experienced by all palliative care patients and affects most aspects of life. Physical functioning (PF) is therefore a crucial domain for quality of life (Qol) assessments. The purpose of this study was to review how PF assessments are performed in Qol instruments developed for palliative care, Methods: For identification of instruments, Medline searches up to April 2005 were performed using the terms (palliative care OR end of life care OR terminal care) AND quality of life AND (assessment OR instrument OR questionnaire). A total of 1326 hits were screened. Named QoL instruments were extracted from 240 abstracts and 46 relevant reports. Items assessing PF were then identified and classified according to activity domains as described by the WHO International Classification of Functioning Disability and Health., Results: Of 224 different instruments detected, 39 were identified as developed for palliative care. Of these, 11 included original PF assessments. Two were comprehensive performance status measures made for staff assessment, 9 were multidimensional tools including 2-7 PF items. The content and phrasing of items varied considerably. All instruments included some aspects of self-care, whereas the coverage of mobility, domestic, work--and leisure activities was inconsistent., Interpretation: Despite its importance, PF assessment seems to be a minor part of palliative care QoL instruments. Clear definitions and conceptualization of PF are needed, as well as a consensus on relevant aspects to include in improved instruments. Performance scales already developed should be further explored with regard to content, validity and psychometric properties.

Missing data is a common problem in palliative care research due to the special characteristics (deteriorating condition, fatigue and cachexia) of the population. Using data from a palliative study, we illustrate the problems that missing data can cause and show some approaches for dealing with it. Reasons for missing data and ways to deal with missing data (including complete case analysis, imputation and modelling procedures) are explored. Possible mechanisms behind the missing data are: missing completely at random, missing at random or missing not at random. In the example study, data are shown to be missing at random. Imputation of missing data is commonly used (including last value carried forward, regression procedures and simple mean). Imputation affects subsequent summary statistics and analyses, and can have a substantial impact on estimated group means and standard deviations. The choice of imputation method should be carried out with caution and the effects reported.

The heterogeneity of the palliative care population represents challenges to research methodology, including study design, informed consent (and ethical issues in general), assessment and classification of symptoms and signs, as well as practical issues in the clinic. The aim of this report is to describe and examine the status of palliative care research in Europe by means of a survey and a literature review. Only one European country, the UK, has taken a national initiative to stimulate and promote palliative care research through the supportive and palliative care collaboratives (SUPAC) in 2005. There are few European research groups in palliative care reaching a critical size, several countries do not have academic chairs in palliative care, and there is no clear trend that chairs are emerging in general. There is little public funding for palliative care research. Palliative care researchers need to compete on the 'open market' or rely on private foundations. There has been a steady increase in the number of abstracts for presentation at the EAPC Research Forums, from 200 in 2000, to 480 in 2006. The literature review indicated that the majority of publications are surveys and descriptive/observational studies, and few randomised, controlled, studies were published. In conclusion, the quantity of research seems to be steadily increasing. There may be a need for larger multi-centre studies, and in order to perform such studies, national and international structures, encompassing research above the critical size, with a multi-disciplinary background including both basic scientists and clinicians is required.

In healthcare, most researchers and clinicians agree that quality of life (QOL) is related to symptoms, functioning, psychological and social wellbeing, and probably to a lesser extent to meaning and fulfillment. This multidimensional health-oriented concept has been named health-related quality of life (HRQOL). However, during end-of-life care spirituality and existential issues become more prominent, as well as family members' perception of quality of care. Outcome measures in palliative care require constructs that reflect the specific goals of palliative care, such as improving QOL before death, symptom control, family support and satisfaction, as well as patients' perceptions of 'purpose' and 'meaning of life'. It is generally recommended that internationally developed and validated patient-rated multidimensional questionnaires should be used when assessing HRQOL in research. However, 'multidimensionality', with often more than 10 possible outcomes, is a threat both to statistical analysis and clinical interpretation of data. Preferentially, a more limited number of outcomes based upon the research question(s) should be defined prior to data collection in the study protocol. The researcher needs to carefully evaluate the content of the questionnaire, in addition to other properties, such as the validity and reliability, before the final decision is made with regards to which instrument to use in a given study.