Comfort in palliative sedation (Compas): a transdisciplinary mixed method study protocol for linking objective assessments to subjective experiences.
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ABSTRACT: In case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient's level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient's comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and pain are undetectable with these traditional behavioral methods. The aim of this study is to better understand how unconscious palliative sedated patients experience the last days of their life and to find out if they are really free of pain.In this study we will observe 40 patients starting with initiation of palliative sedation until death. Assessment of comfort based on behavioral observations will be related with the results from a NeuroSense monitor, an EEG-based monitor used for evaluation of the adequacy of anesthesia and sedation in the operating room and an ECG-based Analgesia Nociception Index (ANI) monitor, which informs about comfort or discomfort condition, based on the parasympathetic tone. An innovative and challenging aspect of this study is its qualitative approach; "objective" and "subjective" data will be linked to achieve a holistic understanding of the study topic. The following data will be collected: assessment of pain/comfort by the patients themselves (if possible) by scoring a Visual Analogue Scale (VAS); brain function monitoring; monitoring of parasympathetic tone; caregivers' assessment (pain, awareness, communication); relatives' perception of the quality of the dying process; assessment by 2 trained investigators using observational scales; video and audio registration.Measuring pain and awareness in non-communicative dying patients is both technically and ethically challenging. ANI and EEG have shown to be promising technologies to detect pain that otherwise cannot be detected with the "traditional" methods. Although these technologies have the potential to provide objective quantifiable indicators for distress and awareness in non-communicative patients, strikingly they have not yet been used to check whether the current assessments for non-communicative patients are reliable.The study is registered on ClinicalTrials.gov (Identifier: NCT03273244 ; registration date: 7.9.2017).
<h4>Background</h4>In case of untreatable suffering at the end of life, palliative sedation may be chosen to assure comfort by reducing the patient's level of consciousness. An important question here is whether such sedated patients are completely free of pain. Because these patients cannot communicate anymore, caregivers have to rely on observation to assess the patient's comfort. Recently however, more sophisticated techniques from the neurosciences have shown that sometimes consciousness and ...[more]
Project description:In insomnia, actigraphy tends to underestimate wake time compared to diaries and PSG. When chronic pain co-occurs with insomnia, sleep may be more fragmented, including more movement and arousals. However, individuals may not be consciously aware of these arousals. We examined the baseline concordance of diaries, actigraphy, and PSG as well as the ability of each assessment method to detect changes in sleep following cognitive behavioral therapy for insomnia (CBT-I).Adults with insomnia and fibromyalgia (n = 113) were randomized to CBT-I, CBT for pain, or waitlist control. At baseline and posttreatment, participants completed one night of PSG and two weeks of diaries/actigraphy.At baseline, objective measures estimated lower SOL, higher TST, and higher SE than diaries (ps < 0.05). Compared to PSG, actigraphic estimates were higher for SOL and lower for WASO (ps < 0.05). Repeated measures ANOVAs were conducted for the CBT-I group (n = 15), and significant method by time interactions indicated that the assessment methods differed in their sensitivity to detect treatment-related changes. PSG values did not change significantly for any sleep parameters. However, diaries showed improvements in SOL, WASO, and SE, and actigraphy also detected the WASO and SE improvements (ps < 0.05).Actigraphy was generally more concordant with PSG than with diaries, which are the recommended assessment for diagnosing insomnia. However, actigraphy showed greater sensitivity to treatment-related changes than PSG; PSG failed to detect any improvements, but actigraphy demonstrated changes in WASO and SE, which were also found with diaries. In comorbid insomnia/fibromyalgia, actigraphy may therefore have utility in measuring treatment outcomes.
Project description:Understanding the social determinants of child health is a prominent area of research. This paper examines the measurement of socioeconomic position in a sample of families of children with cancer. Socioeconomic position is difficult to measure in pediatric health research due to sensitivity of asking about finances when research is conducted in health care delivery settings, financial volatility associated with periods of pediatric illness, and difficulty recruiting fathers to research.Caregivers of children with cancer (n=76) completed a questionnaire that included the MacArthur Scale of Subjective Social Status (SSS). SSS was measured using two 10-rung ladders with differing referent groups: the US and respondents' communities. Respondents placed themselves on each ladder by placing an X on the rung that represented their social position in relation to the two referent groups. Individuals' SSS ratings and discrepancies in SSS ratings within couples were examined, and associations with objective social status measures were evaluated using Pearson correlations or t-tests.Parents' placement on the US and community ladders was positively associated with their income, education, wealth, household savings, and household savings minus debt. On average, respondents placed themselves higher on the US ladder compared to the community ladder. There was an average intra-couple discrepancy of 1.25 rungs in partner's placements on the US ladder and a 1.56 rung difference for the community ladder. This intra-couple discrepancy was not associated with gender.Results offer insight into the use of subjective social status measures to capture a more holistic assessment of socioeconomic position and the measurement of socioeconomic position in two-parent families.
Project description:ObjectivesThis study investigated whether older adults with better relationships with their adult children have better subjective and objective sleep quality than older adults with less-positive relationships with their children. We also examined whether depressive symptoms and loneliness mediated the association between parent-child relationships and sleep among older adults.MethodsData were used from the second wave of the National Social life, Health, and Aging Project, in which 548 respondents (aged 62-90) participated in the sleep survey to measure their actigraph sleep activity for three consecutive days. Respondents also reported sleep quality (i.e., sleep duration and insomnia symptoms), contact frequency, and emotional closeness with their children.ResultsResults from structural equation modeling showed that greater emotional closeness with children was directly associated with better objective sleep characteristics (i.e., sleep fragmentation and amount of sleep). Also, more frequent contact with children was directly related to fewer insomnia symptoms among older adults. Moreover, emotional closeness with children was indirectly linked to insomnia symptoms via depressive symptoms among older adults.DiscussionThis study provided evidence for psychological pathways linking parent-child relationships and older parents' subjective sleep. The findings have implications for health professionals and family counselors who help people with sleep problems and relationship difficulties.
Project description:BackgroundPost-traumatic trigeminal neuropathy (PTN) can have a substantial effect on patient well-being. However, the relation between the neuropathic symptoms and their effect on psychosocial functioning remains a matter of debate. The purpose of this study was to evaluate the association between objective and subjective assessments of neurosensory function in PTN and predict neurosensory outcome using baseline measurements.MethodsThis prospective observational cohort study included patients diagnosed with PTN at the Department of Oral and Maxillofacial Surgery, University Hospital Leuven, Belgium, between April 2018 and May 2020. Standardized objective and subjective neurosensory examinations were recorded simultaneously on multiple occasions during the follow-up period. Correlation analyses and principal component analysis were conducted, and a prediction model of neurosensory recovery was developed.ResultsQuality of life correlated significantly (P < 0.05) with percentage of affected dermatome (ρ = - 0.35), the presence of brush stroke allodynia (ρ = - 0.24), gain-of-function sensory phenotype (ρ = - 0.41), Medical Research Council Scale (ρ = 0.36), and Sunderland classification (ρ = - 0.21). Quality of life was not significantly correlated (P > 0.05) with directional discrimination, stimulus localization, two-point discrimination, or sensory loss-of-function. The prediction model showed a negative predictive value for neurosensory recovery after 6 months of 87%.ConclusionsWe found a strong correlation of subjective well-being with the presence of brush stroke allodynia, thermal and/or mechanical hyperesthesia, and the size of the neuropathic area. These results suggest that positive symptoms dominate the effect on affect. In patients reporting poor subjective well-being in the absence of positive symptoms or a large neuropathic area, additional attention towards psychosocial triggers might enhance treatment outcome. The prediction model could contribute to establishing realistic expectations about the likelihood of neurosensory recovery but remains to be validated in future studies.
Project description:IntroductionUncertainty surrounding the accurate assessment of the early-stage Alzheimer's disease (AD) may cause delayed care and inappropriate patient access to new AD therapies.MethodsTo analyze clinical assessments of patients with AD in the Veteran's Affairs (VA) Healthcare System and evaluate concordance between subjective and objective assessments, we processed clinical notes extracted by text integration utilities between April 1, 2008 and October 14, 2021. Veterans who had mild, moderate, or severe AD with clinical notes documenting both clinician's judgement of AD severity and objective test scores from the Mini-Mental State Examination or the Montreal Cognitive Assessment were included. Using clinician-defined severity cohorts, we determined concordance between the clinician's (subjective) assessments and the test-derived (objective) assessments of AD severity. Concordance was assessed over time and by selected symptoms and comorbidities, as well as healthcare system factors.ResultsA total of 8888 notes were initially extracted; the final analysis sample included 7514 notes corresponding to 4469 unique patients (mean [standard deviation] age of 78 [9] years; 96.5% male; 77.8% White). Subjective and objective assessments were concordant in approximately half (53%) of overall notes. In the mild Alzheimer's cohort, patients were assessed to have more severe disease by objective test scores in 40% of notes. Concordance varied about 21-73%, 47-58%, and 40-64% across symptoms/comorbidities, clinician types, and Veteran's Integrated Service Networks, respectively. The proportion of concordant notes was higher in visits to dementia (61%) instead of non-dementia clinics (53%).ConclusionsWe found higher concordance between clinician's assessment and test-based assessment of Alzheimer's disease severity in dementia specialty clinics. Discordance is especially high for the subjectively assessed mild AD cohort where objective assessments showed a higher severity level in 40% of notes. These data indicate a critical need for improved understanding of clinical assessments and decision-making to identify appropriate patients for anti-amyloid therapy.
Project description:AimThe present study aimed to investigate the prevalence rate of objective and subjective psychosis-like experiences (PLEs) in non-help-seeking college students and to explore their differential contributions to suicidal ideation.MethodsFirst-year college students were recruited and surveyed with the Chinese version of the 16-item Prodromal Questionnaire (CPQ-16), Childhood Trauma Questionnaire (CTQ-SF), Patient Health Questionnaire-9 (PHQ-9), General Anxiety Disorder-7 (GAD-7) and Beck Scale for Suicide Ideation (BSI). The Structured Interview of Psychosis-Risk Syndromes (SIPS) was conducted in individuals with a CPQ-16 score of 9 or higher.ResultsData were available for 8367 students. Three hundred and seventy of them scored 9 or higher on the CPQ-16, suggesting potential PLEs (4.42%). Among them, 194 agreed to the SIPS screening. The PLEs were confirmed in 103 individuals who scored 1-5 on any positive symptom scales of the SIPS (objective PLEs, oPLEs). For the remaining 91 individuals, their PLEs were not confirmed by the SIPS and thus were categorized as individuals with subjective PLEs (sPLEs). In univariate logistic regression, oPLEs was associated with a two times risk of suicidal ideation compared to sPLEs (OR = 1.971, p = .029). In multivariate logistic regression when non-PLE status was set as a reference, oPLEs significantly predicted suicidal ideation (OR = 3.441, p = .011), while the sPLEs (OR = 2.277, p = .091) was no longer a significant predictor after controlling for PHQ-9, GAD-7 and CPQ-SF scores.ConclusionsOPLEs and sPLEs have differential contributions to suicidal ideation. OPLEs seems to be associated with a higher risk of suicidal ideation and is independent of other psychopathology.
Project description:In research and clinical contexts, parents' report and sleep diary filled in by parents are often used to characterize sleep-wake rhythms in children. The current study aimed to investigate children self-perception of their sleep, by comparing sleep diaries filled in by themselves, actigraphic sleep recordings, and parental subjective estimation. Eighty children aged 8-9 years wore actigraph wristwatches and completed sleep diaries for 7 days, while their parents completed a sleep-schedule questionnaire about their child' sleep. The level of agreement and correlation between sleep parameters derived from these three methods were measured. Sleep parameters were considered for the whole week and school days and weekends separately and a comparison between children with high and low sleep efficiency was carried out. Compared to actigraphy, children overestimated their sleep duration by 92 min and demonstrated significant difficulty to assess the amount of time they spent awake during the night. The estimations were better in children with high sleep efficiency compared to those with low sleep efficiency. Parents estimated that their children went to bed 36 min earlier and obtained 36.5 min more sleep than objective estimations with actigraphy. Children and parents' accuracy to estimate sleep parameters was different during school days and weekends, supporting the importance of analyzing separately school days and weekends when measuring sleep in children. Actigraphy and sleep diaries showed good agreement for bedtime and wake-up time, but not for SOL and WASO. A satisfactory agreement for TST was observed during school days only, but not during weekends. Even if parents provided more accurate sleep estimation than children, parents' report, and actigraphic data were weakly correlated and levels of agreement were insufficient. These results suggested that sleep diary completed by children provides interesting measures of self-perception, while actigraphy may provide additional information about nocturnal wake times. Sleep diary associated with actigraphy could be an interesting tool to evaluate parameters that could contribute to adjust subjective perception to objective sleep values.
Project description:We propose an integrated and adaptable approach to improve patient care and clinical outcomes through analgesia and light sedation, initiated early during an episode of critical illness and as a priority of care. This strategy, which may be regarded as an evolution of the Pain, Agitation and Delirium guidelines, is conveyed in the mnemonic eCASH-early Comfort using Analgesia, minimal Sedatives and maximal Humane care. eCASH aims to establish optimal patient comfort with minimal sedation as the default presumption for intensive care unit (ICU) patients in the absence of recognised medical requirements for deeper sedation. Effective pain relief is the first priority for implementation of eCASH: we advocate flexible multimodal analgesia designed to minimise use of opioids. Sedation is secondary to pain relief and where possible should be based on agents that can be titrated to a prespecified target level that is subject to regular review and adjustment; routine use of benzodiazepines should be minimised. From the outset, the objective of sedation strategy is to eliminate the use of sedatives at the earliest medically justifiable opportunity. Effective analgesia and minimal sedation contribute to the larger aims of eCASH by facilitating promotion of sleep, early mobilization strategies and improved communication of patients with staff and relatives, all of which may be expected to assist rehabilitation and avoid isolation, confusion and possible long-term psychological complications of an ICU stay. eCASH represents a new paradigm for patient-centred care in the ICU. Some organizational challenges to the implementation of eCASH are identified.
Project description:Background and objectivesPerformance on cognitive tasks is often impaired in individuals with schizophrenia (SCZ), possibly resulting from either cognitive deficits (e.g., limited working memory capacity) or diminished mental effort or both. Investment of mental effort itself can be affected by cognitive resources, task load, and motivational factors and has thus proven difficult to measure. Pupil dilation during task performance has been proposed as an objective measure, but it remains unclear to what extent this converges with self-reports of perceived task demands, motivation, and invested effort. The current study tried to elucidate this question.MethodsA visual version of the digit span task was administered in a sample of 29 individuals with a diagnosis from the SCZ spectrum and 30 individuals without any psychiatric disorder. Pupil size was recorded during the task, whereas self-reported invested effort and task demand were measured afterward.ResultsNo group difference was found for working memory capacity, but individuals with SCZ showed diminished trial-by-trial recall accuracy, showed reduced pupil dilation across all task load conditions, and reported higher perceived task demands.ConclusionResults indicate reduced effort investment in patients with SCZ, but it remains unclear to what extent this alone could explain the lower recall performance. The lack of a direct link between objective and subjective measures of effort further suggests that both may assess different facets of effort. This has important implications for clinical and research settings that rely on the reliability of neuropsychological test results when assessing cognitive capacity in this patient group.
Project description:Evaluation is a major issue in discussions of transdisciplinary research (TDR). Empirical studies often consider expert perspectives; however, knowledge of the experiences, attitudes, and motivations of a broader science-practice community applying transdisciplinarity remains rare. The present study aims to gather insights into the perceptions and assessments of success of TDR projects from scientists and practitioners with experience with TDR processes. Based on a mixed-method approach combining qualitative expert interviews with a quantitative survey reaching 178 respondents from practice and science, the results show a high commitment to the targets of TDR projects and a basic shared 'success profile'. Nevertheless, there is currently a strong 'practice tendency', while TDR-specific benefits of the scientific knowledge gain remain neglected. The general success assessment of TDR projects can be described as rather moderate, indicating several deficits in the application and management of TDR.
