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:Objective/backgroundSelf-reported sleep difficulties, such as insomnia symptoms, have been reported among adolescents. Yet, studies of their prevalence and correlates are scarce among Latin Americans. This study sought (1) to describe associations between sociodemographic and lifestyle factors with self-reported sleep difficulties and (2) to examine associations between self-reported sleep difficulties and actigraphy-based sleep.ParticipantsParticipants included 477 Mexican adolescents from the ELEMENT cohort.MethodsOver 7 days, self-reported sleep measures (hard time falling asleep, overall sleep difficulties, and specific types of sleep difficulties) were obtained from daily sleep diaries. Actigraphy-based sleep measures (duration, i.e. sleep onset to morning wake, midpoint, and fragmentation) were concurrently assessed using a wrist actigraph.ResultsMean (SD) age was 15.9 (2.2) years, and 53.5% were females. Mean (SD) sleep duration was 8.5 (1.2) h/night. Half reported a hard time falling asleep at least 3 days, and 25% had sleep difficulties at least 3 days over 7 days. The 3 types of sleep difficulties commonly reported among the entire cohort were insomnia/restlessness (29%), environmental (27%), and mental/emotional difficulties (19%). Female sex, smoking behavior, and socioeconomic indicators were among the most consistent factors associated with sleep difficulties. Subjective sleep difficulties were associated with shorter sleep duration (β = -20.8 [-35.3, -6.2] min), while subjective hard time falling asleep was associated with longer sleep duration (β = 11.3 [4.6, 27.2] min).ConclusionA high proportion of Mexican adolescents in the sample reported sleep difficulties. Findings demonstrate the importance of obtaining subjective and objective sleep measures for a more comprehensive assessment of adolescent sleep.
Project description:The pro-rich nature of catastrophic health expenditure (CHE) indicators has garnered criticism, inspiring the exploration of the subjective approach as a complementary method. However, no studies have examined the discrepancy between subjective and objective approaches. Employing data from the Chinese Social Survey (CSS) 2013-2021 waves, we analysed the discrepancy between objective and subjective CHE and its associated socioeconomic factors using logit regression modelling. Overall, self-rating generated higher CHE incidence (28.35% to 33.72%) compared to objective indicators (9.92% to 21.97%). Objective indicators did not support 17.57% to 23.90% of self-rated cases of household CHE, while 2.73% to 8.42% of households classified with CHE by objective indicators did not self-rate with CHE. The normative subsistence spending indicator showed the least consistency with self-rating (70.66% to 74.28%), while the budget share method produced the most consistent estimation (72.73% to 76.10%). Living with elderly and young children [adjusted odds ratios (AOR): 1.069 to 1.169, P < 0.1], lower educational attainment (AOR: 1.106 to 1.225, P < 0.1), lower income (AOR: 1.394 to 2.062, P < 0.01), and lower perceived social class (AOR: 1.537 to 2.801, P < 0.05) were associated with higher odds of self-rated CHE without support from objective indicators. Conversely, low socioeconomic status (AOR: 0.324 to 0.819, P < 0.1) was associated with lower odds of missing CHE cases classified by objective indicators in self-rating. The commonly used objective indicators for assessing CHE may attract doubts about their fairness from socioeconomically disadvantaged people. The CHE subjective approach can be adopted as a complementary measure to monitor financial risk protection.
Project description:Study objectivesIn 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).MethodsAdults 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.ResultsAt 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).ConclusionsActigraphy 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:Sleep insufficiency and sleep disorders pose serious health challenges. This study aimed to determine the potential discrepancy between subjective and objective sleep assessments, including the latter made by physicians, by analyzing a 421-participant dataset in Japan comprising multiple nights of in-home sleep electroencephalogram (EEG) data and questionnaire responses on sleep habits or subjective experiences. We employed logistic regression models to examine which subjective and objective sleep parameters physicians are paying attention to when assessing sleep insufficiency, insomnia, sleep quality, and sleep apnea. Questionnaire responses, including subjective sleep assessments, exhibited poor performance predicting physicians' assessments, whereas objective data demonstrated good predictive performance, indicating a discrepancy between subjective and objective sleep assessments. Although the in-home sleep EEG measurements had minimal first night effects, incorporating measurements over multiple nights can improve the detection of objective insomnia. Moreover, we found that participants with severe sleep insufficiency overestimated their sleep duration, whereas those with subjective insomnia but without objective insomnia underestimated it. Additionally, subjective sleep quality reflected sleep efficiency but not the frequency of short awakenings or objective sleep depth. In particular, the effects of apnea on objective sleep quality were not subjectively perceived. Collectively, our findings suggest that subjective sleep assessments alone are insufficient for evaluating sleep health and that health checkups and advice based on sleep EEG measurements may be useful in improving sleep habits and for early detection of sleep disorders.
Project description:Leisure engagement has potential to slow health and functional decline in older age. However, the benefits of different leisure domains for different aspects of aging remains unclear. In 8771 older adults from the Health and Retirement Study (a longitudinal panel study), we measured engagement in physical, creative, cognitive, and community activities. Outcome-wide analyses used 23 aging experiences across seven domains eight years later (daily functioning, physical fitness, long-term physical health problems, heart health, weight, sleep, subjective perceptions of health). Physical activity was related to more positive experiences in all domains but heart health eight years later. Creative engagement was positively related to aging experiences in four domains longitudinally. Cognitive and community engagement were less consistently related to aging experiences. Physical and creative activities may influence important aging metrics, reducing age-related decline and keeping older adults functionally independent for longer, potentially limiting increasing healthcare costs.
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: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:For many individuals, music has a significant impact on the quality and enjoyability of life. Cochlear implant (CI) users must cope with the constraints that the CI imposes on music perception. Here, we assessed the musical experiences of young CI users and age-matched controls with normal hearing (NH). CI users and NH peers were divided into subgroups according to age: children and adolescents. Participants were tested on their ability to recognize vocal and instrumental music and instruments. A music questionnaire for pediatric populations (MuQPP) was also used. CI users and NH peers identified a similar percentage of vocal music. CI users were significantly worse at recognizing instruments (p < 0.05) and instrumental music (p < 0.05). CI users scored similarly to NH peers on the MuQPP, except for the musical frequency domain, where CI users in the children subgroup scored higher than their NH peers (p = 0.009). For CI users in the children subgroup, the identification of instrumental music was positively correlated with music importance (p = 0.029). Young CI users have significant deficits in some aspects of music perception (instrumental music and instrument identification) but have similar scores to NH peers in terms of interest in music, frequency of music exposure, and importance of music.
