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Caregivers of those with neurodegenerative disease (ND) manage complex symptoms which impact their wellbeing. Self-compassion can promote maintenance of wellbeing during challenging experiences, including caregiving. Little guidance exists for observationally studying self-compassion or targeted interventions for this population. Our objective was to complete a scoping review of research describing self-compassion in the context of caregiver wellbeing of caregivers of those living with ND.
Methods
Following Preferred Reporting Items for Systematic Reviews and Meta-analysis extension for Scoping Reviews (PRISMA-ScR) guidelines, 3 online databases identified 350 peer-reviewed articles, 18 of which were included in this study. Eligibility included being written in English, targeting caregivers of those living with ND, and examination of self-compassion. Articles were organized by the incorporation or characterization of self-compassion in the study design.
Results
Alzheimer’s disease predominated study samples of care recipients. Across study types self-compassion appeared as a theoretical concept, emerging theme, variable associated with other outcomes, and main outcome variable. Self-compassion is frequently measured using the Self-Compassion Scale, full or short form .
Significance of results
The study of self-compassion with caregivers of individuals living with ND is growing. Current literature is somewhat unfocussed, leading to gaps in understanding conceptualization to achieve maximum intervention benefits. Clarifying the role of self-compassion in caregiver wellbeing will provide a lens through which non-pharmacologic, psychotherapeutic, and behavioral intervention development may be framed to reduce negative psychological outcomes. The most frequently represented ND is Alzheimer’s disease or other dementia, obscuring other NDs like amyotrophic lateral sclerosis, Parkinson’s disease, and others.
Although medical advancements have improved the mortality of CHD, morbidity still exists, impacting patient quality of life. Returning to baseline in the early surgical recovery phase is an area of potential improvement. This preliminary project aims to qualitatively understand CHD family perspectives concerning the immediate postoperative recovery phase. The participating patients enrolled in the Enhanced Recovery After Surgery program, a postsurgical symptom management tool utilised in adult centres and broadening into pediatrics. Twenty-three of 27 contacted families answered open-ended questions 1 to 3 months postoperatively regarding difficulties experienced during their first week home. They reviewed a list of symptoms including: difficulties with pain, nausea, activity, sleep, appetite, bowel or urinary systems, and taking medications. A qualitative thematic analysis was performed with the open responses, as well as a quantitative assessment of the types of issues that made recovery challenging. Participants struggled most with sleep (78%), returning to activity (70%), and pain (57%). Open-ended responses suggested that an inability to do daily activities, sleep (frequently impacted by pain), and inadequate resources most negatively impacted recovery. Given these findings, investigating postoperative sleep regimens and effective pain plan components may prove useful, in addition to the further development of early mobility programs. The positive and negative experiences highlighting the desire for readily available medical guidance enforce the need for open communication between families and team members, potentially aided by digital tools. Ultimately, further data could support the development of a standardised protocol to better the immediate postoperative quality of life for CHD families.
In response to the COVID-19 pandemic, we rapidly implemented a plasma coordination center, within two months, to support transfusion for two outpatient randomized controlled trials. The center design was based on an investigational drug services model and a Food and Drug Administration-compliant database to manage blood product inventory and trial safety.
Methods:
A core investigational team adapted a cloud-based platform to randomize patient assignments and track inventory distribution of control plasma and high-titer COVID-19 convalescent plasma of different blood groups from 29 donor collection centers directly to blood banks serving 26 transfusion sites.
Results:
We performed 1,351 transfusions in 16 months. The transparency of the digital inventory at each site was critical to facilitate qualification, randomization, and overnight shipments of blood group-compatible plasma for transfusions into trial participants. While inventory challenges were heightened with COVID-19 convalescent plasma, the cloud-based system, and the flexible approach of the plasma coordination center staff across the blood bank network enabled decentralized procurement and distribution of investigational products to maintain inventory thresholds and overcome local supply chain restraints at the sites.
Conclusion:
The rapid creation of a plasma coordination center for outpatient transfusions is infrequent in the academic setting. Distributing more than 3,100 plasma units to blood banks charged with managing investigational inventory across the U.S. in a decentralized manner posed operational and regulatory challenges while providing opportunities for the plasma coordination center to contribute to research of global importance. This program can serve as a template in subsequent public health emergencies.
Despite high levels of psychological distress, mental health service use among Syrian refugees in urban settings is low. To address the mental healthcare gap, the World Health Organization developed group problem management plus (gPM+), a scalable psychological intervention delivered by non-specialist peer facilitators. The study aimed to evaluate the effectiveness of gPM+ in reducing symptoms of depression and anxiety among Syrian refugees in Istanbul, Türkiye.
Methods
A randomized controlled trial was conducted among 368 distressed (Kessler Psychological Distress Scale, K10 > 15) adult Syrian refugees with impaired functioning (World Health Organization Disability Assessment Schedule, WHODAS 2.0 > 16). Participants were recruited between August 2019 and September 2020 through a non-governmental organization providing services to refugees. Participants were randomly allocated to gPM+ and enhanced care as usual (gPM+/E-CAU) (184 participants) or E-CAU only (184 participants). Primary outcomes were symptoms of depression and anxiety (Hopkins Symptom Checklist (HSCL-25)) at 3-month follow-up. Secondary outcomes were post-traumatic stress disorder (PTSD) symptoms (PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-5; PCL-5), functional impairment (WHODAS 2.0), and self-identified problems (psychological outcome profiles).
Results
Intent-to-treat analyses showed no significant effect of gPM+ on symptoms of anxiety, depression, PTSD and self-identified problems. Yet, there was a significant reduction in functional impairment in gPM+/E-CAU compared to E-CAU at 3-month follow-up (adjusted mean difference 1.66, 95 % CI 0.04, 3.27, p = 0.045, d = 0.19). Post-hoc subgroup analyses among participants with probable baseline depression or anxiety showed that there was a small but significant reduction in depression (adjusted mean difference −0.17, 95 % CI −0.32, −0.02, p = 0.028, d = 0.27) and anxiety (adjusted mean difference −0.21, 95 % CI −0.37, −0.05, p = 0.009, d = 0.30) symptoms comparing gPM+/E-CAU to E-CAU only at 1-week post assessment, but not at 3-month follow-up. There was a significant difference between conditions on functional impairment at 3-month follow-up, favouring gPM+/E-CAU condition (adjusted mean difference −1.98, 95 % CI −3.93, −0.02, p = 0.048, d = 0.26).
Conclusion
In this study in an urban setting in Türkiye, gPM+ did not alleviate symptoms of depression and anxiety among Syrian refugees experiencing psychological distress and daily living difficulties. However, participants with higher distress at baseline seemed to benefit from gPM+, but treatment gains disappeared in the long term. Current findings highlight the potential benefit of tailored psychosocial interventions for highly distressed refugees in volatile low-resource settings.
The COVID-19 pandemic is associated with increases in child mental health problems, but the persistence of these changes in the post-pandemic era remains uncertain. Additionally, it is unclear whether changes in mental health problems during the pandemic exceed the anticipated increases as children age. This study controls for the linear effect of age in 1399 children, investigating the course of child-reported anxiety, depression, hyperactivity, and inattention symptoms during and after the pandemic, and identifies risk and protective factors that predict these mental health trajectories.
Methods
Children (51% male; ages 9–11 at the first timepoint) provided mental health ratings at three pandemic timepoints (July–August 2020; March–April 2021; November 2021–January 2022) and one post-pandemic timepoint (January–July 2023). Mothers reported pre-pandemic mental health (2017–2019) and socio-demographic factors. Children reported socio-demographic factors, risk (e.g. screen time, sleep), and resilience (e.g. optimism) factors during the first timepoint.
Results
Average mental health symptoms increased over time, with more children exceeding clinical cut-offs for poor mental health at each subsequent pandemic timepoint. Growth curve modeling, adjusting for age-related effects, revealed a curvilinear course of mental health symptoms across all domains. Examination of risk and protective factors revealed that pre-existing mental health symptoms and optimism were associated with the course of symptoms.
Conclusions
After considering age effects, children's mental health follows a curvilinear pattern over time, suggesting an initial decline followed by a rising trend in symptoms post-COVID. These findings underscore the continued need for additional resources and timely, evidence-based mental health prevention and intervention for children.
Faecal examinations for helminth eggs were performed on 1869 people from two riverside localities, Vientiane Municipality and Saravane Province, along the Mekong River, Laos. To obtain adult flukes, 42 people positive for small trematode eggs (Opisthorchis viverrini, heterophyid, or lecithodendriid eggs) were treated with a 20–30 mg kg−1 single dose of praziquantel and purged. Diarrhoeic stools were then collected from 36 people (18 in each area) and searched for helminth parasites using stereomicroscopes. Faecal examinations revealed positive rates for small trematode eggs of 53.3% and 70.8% (average 65.2%) in Vientiane and Saravane Province, respectively. Infections with O. viverrini and six species of intestinal flukes were found, namely, Haplorchistaichui, H. pumilio, H. yokogawai, Centrocestus caninus,Prosthodendrium molenkampi, and Phaneropsolus bonnei. The total number of flukes collected and the proportion of fluke species recovered were markedly different in the two localities; in Vientiane, 1041 O. viverrini (57.8 per person) and 615 others (34.2 per person), whereas in Saravane, 395 O. viverrini (21.9 per person) and 155207 others (8622.6 per person). Five people from Saravane harboured no O. viverrini but numerous heterophyid and/or lecithodendriid flukes. The results indicate that O. viverrini and several species of heterophyid and lecithodendriid flukes are endemic in these two riverside localities, and suggest that the intensity of infection and the relative proportion of fluke species vary by locality along the Mekong River basin.
High-quality evidence is lacking for the impact on healthcare utilisation of short-stay alternatives to psychiatric inpatient services for people experiencing acute and/or complex mental health crises (known in England as psychiatric decision units [PDUs]). We assessed the extent to which changes in psychiatric hospital and emergency department (ED) activity were explained by implementation of PDUs in England using a quasi-experimental approach.
Methods
We conducted an interrupted time series (ITS) analysis of weekly aggregated data pre- and post-PDU implementation in one rural and two urban sites using segmented regression, adjusting for temporal and seasonal trends. Primary outcomes were changes in the number of voluntary inpatient admissions to (acute) adult psychiatric wards and number of ED adult mental health-related attendances in the 24 months post-PDU implementation compared to that in the 24 months pre-PDU implementation.
Results
The two PDUs (one urban and one rural) with longer (average) stays and high staff-to-patient ratios observed post-PDU decreases in the pattern of weekly voluntary psychiatric admissions relative to pre-PDU trend (Rural: −0.45%/week, 95% confidence interval [CI] = −0.78%, −0.12%; Urban: −0.49%/week, 95% CI = −0.73%, −0.25%); PDU implementation in each was associated with an estimated 35–38% reduction in total voluntary admissions in the post-PDU period. The (urban) PDU with the highest throughput, lowest staff-to-patient ratio and shortest average stay observed a 20% (−20.4%, CI = −29.7%, −10.0%) level reduction in mental health-related ED attendances post-PDU, although there was little impact on long-term trend. Pooled analyses across sites indicated a significant reduction in the number of voluntary admissions following PDU implementation (−16.6%, 95% CI = −23.9%, −8.5%) but no significant (long-term) trend change (−0.20%/week, 95% CI = −0.74%, 0.34%) and no short- (−2.8%, 95% CI = −19.3%, 17.0%) or long-term (0.08%/week, 95% CI = −0.13, 0.28%) effects on mental health-related ED attendances. Findings were largely unchanged in secondary (ITS) analyses that considered the introduction of other service initiatives in the study period.
Conclusions
The introduction of PDUs was associated with an immediate reduction of voluntary psychiatric inpatient admissions. The extent to which PDUs change long-term trends of voluntary psychiatric admissions or impact on psychiatric presentations at ED may be linked to their configuration. PDUs with a large capacity, short length of stay and low staff-to-patient ratio can positively impact ED mental health presentations, while PDUs with longer length of stay and higher staff-to-patient ratios have potential to reduce voluntary psychiatric admissions over an extended period. Taken as a whole, our analyses suggest that when establishing a PDU, consideration of the primary crisis-care need that underlies the creation of the unit is key.
Stroke outcomes research requires risk-adjustment for stroke severity, but this measure is often unavailable. The Passive Surveillance Stroke SeVerity (PaSSV) score is an administrative data-based stroke severity measure that was developed in Ontario, Canada. We assessed the geographical and temporal external validity of PaSSV in British Columbia (BC), Nova Scotia (NS) and Ontario, Canada.
Methods:
We used linked administrative data in each province to identify adult patients with ischemic stroke or intracerebral hemorrhage between 2014-2019 and calculated their PaSSV score. We used Cox proportional hazards models to evaluate the association between the PaSSV score and the hazard of death over 30 days and the cause-specific hazard of admission to long-term care over 365 days. We assessed the models’ discriminative values using Uno’s c-statistic, comparing models with versus without PaSSV.
Results:
We included 86,142 patients (n = 18,387 in BC, n = 65,082 in Ontario, n = 2,673 in NS). The mean and median PaSSV were similar across provinces. A higher PaSSV score, representing lower stroke severity, was associated with a lower hazard of death (hazard ratio and 95% confidence intervals 0.70 [0.68, 0.71] in BC, 0.69 [0.68, 0.69] in Ontario, 0.72 [0.68, 0.75] in NS) and admission to long-term care (0.77 [0.76, 0.79] in BC, 0.84 [0.83, 0.85] in Ontario, 0.86 [0.79, 0.93] in NS). Including PaSSV in the multivariable models increased the c-statistics compared to models without this variable.
Conclusion:
PaSSV has geographical and temporal validity, making it useful for risk-adjustment in stroke outcomes research, including in multi-jurisdiction analyses.
Cognitive tests requiring spoken responses, such as paragraph recall, are rich in cognitive-related information that is not captured using traditional scoring methods. This study aimed to determine if linguistic features embedded in spoken responses may differentiate between individuals who are and are not cognitively impaired.
Participants and Methods:
Participants in the Long Life Family Study completed a neuropsychological assessment which included the WMS-R Logical Memory I paragraph recall. For a subset of participants (N=709), test responses were digitally recorded and manually transcribed. We used Linguistic Inquiry Word Count, a text analysis program, to quantify word counts, grammatical features (e.g, prepositions, verb tenses), and the use of content words related to specific semantic categories (e.g., work-related, numbers) for immediate (IR) and delayed recall (DR). We used regression models with Generalized Estimating Equations adjusted by age, sex, education, and within-family correlation to select features associated with cognitive status (normal cognition [NC] versus cognitive impairment [CI]; Bonferroni-corrected threshold p<0.001). Next, we developed a “polyfeature score” (PFS) for both immediate and delayed recall, each calculated as a weighted sum of the selected linguistic features. We then built a logistic regression model to evaluate the predictive value of each PFS for identifying cognitively impaired individuals. In secondary analyses, we used regression models as above to identify features associated with mild cognitive impairment subtype (amnestic [aMCI] versus nonamnestic [naMCI]; threshold p< .05).
Results:
The sample included 599 participants with NC and 110 with CI (mean age = 72.3 ± 11.0 years, 54% female). The regression identified 8 linguistic features for IR and 7 for DR that significantly predicted cognitive status. Decreased use of content words related to work (e.g., employed, school, police) and biological processes (e.g., cook, cafeteria, eat) and the use of negations (e.g., no, not, can’t) were predictive of cognitive impairment in both recall conditions. In contrast, the use of other content word categories were predictive of cognitive status in only one recall condition (IR: leisure, cognitive processes, space; DR: drives, number). The use of fewer prepositions in IR, more first-person pronouns in DR, and fewer words in the past tense in DR were each associated with cognitive impairment. Word count was not predictive of cognitive status. Both PFSs were highly associated with cognitive status (PFS_IR ß= 0.74, p< 0.001; PFS_DR ß= 0.86, p= 0.001) with high discriminative value (PFS_IR AUC= 0.93, sensitivity = 0.81, specificity= 0.91; PFS_DR AUC= 0.95, sensitivity= 0.77, specificity= 0.88). In the CI subset, linguistic features differed between those classified as aMCI (n= 24) and naMCI (n= 40). Two function word categories predicted aMCI in IR whereas decreased word count, two function word categories, and two content word categories predicted aMCI in DR (all p< .05)
Conclusions:
Linguistic features from paragraph recall provide high predictive value for classifying cognitive status increasing its potential as a cognitive screener in clinical settings. Additionally, each recall condition identified unique linguistic features associated with cognitive impairment which may aid differentiation of cognitive impairment subtypes and elucidate processes underlying deficits in learning and recall.
Since the onset of COVID-19 pandemic, additional risk factors affecting family caregivers’ mental health have arisen. Therefore, personal stress coping strategies and family dynamics became important factors in reducing the impact of the pandemic on family caregivers’ mental health. The present research aimed to estimate the association between COVID-19 stressors and family caregiving burden. Moreover, moderating effects of emotion dysregulation and family functioning on this association were investigated.
Methods
This study analyzed data collected in April 2021 from 154 family caregivers (Mage = 38.79, SDage = 9.36, range = 22–64) recruited through Amazon’s Mechanical Turk (MTurk). The impact of COVID-19 stressors on family caregiving burden was tested, and moderating impacts of emotion dysregulation and family functioning were also investigated.
Results
Both COVID-19 stress exposure and stress appraisal were positively associated with family caregiving burden. Emotion dysregulation and problematic family functioning were also positively associated with family caregiving burden. A significant moderating effect of emotion dysregulation was found, such that family caregivers with higher emotion dysregulation were likely to feel more caregiving burden when they experienced more COVID-19 stressors.
Significance of results
The current research highlighted the role of emotion regulation in reducing the negative impact of COVID-19 stressors on family caregiving burden. The research also emphasizes the need for intervention programs to improve emotion regulation strategies to decrease family caregiving burden during the pandemic.
With the advent of deep, all-sky radio surveys, the need for ancillary data to make the most of the new, high-quality radio data from surveys like the Evolutionary Map of the Universe (EMU), GaLactic and Extragalactic All-sky Murchison Widefield Array survey eXtended, Very Large Array Sky Survey, and LOFAR Two-metre Sky Survey is growing rapidly. Radio surveys produce significant numbers of Active Galactic Nuclei (AGNs) and have a significantly higher average redshift when compared with optical and infrared all-sky surveys. Thus, traditional methods of estimating redshift are challenged, with spectroscopic surveys not reaching the redshift depth of radio surveys, and AGNs making it difficult for template fitting methods to accurately model the source. Machine Learning (ML) methods have been used, but efforts have typically been directed towards optically selected samples, or samples at significantly lower redshift than expected from upcoming radio surveys. This work compiles and homogenises a radio-selected dataset from both the northern hemisphere (making use of Sloan Digital Sky Survey optical photometry) and southern hemisphere (making use of Dark Energy Survey optical photometry). We then test commonly used ML algorithms such as k-Nearest Neighbours (kNN), Random Forest, ANNz, and GPz on this monolithic radio-selected sample. We show that kNN has the lowest percentage of catastrophic outliers, providing the best match for the majority of science cases in the EMU survey. We note that the wider redshift range of the combined dataset used allows for estimation of sources up to $z = 3$ before random scatter begins to dominate. When binning the data into redshift bins and treating the problem as a classification problem, we are able to correctly identify $\approx$76% of the highest redshift sources—sources at redshift $z > 2.51$—as being in either the highest bin ($z > 2.51$) or second highest ($z = 2.25$).
Background: ALS is a progressive neurodegenerative disease without a cure and limited treatment options. Edaravone, a free radical scavenger, was shown to slow disease progression in a select group of patients with ALS over 6 months; however, the effect on survival was not investigated in randomized trials. The objective of this study is to describe real-world survival effectiveness over a longer timeframe. Methods: This retrospective cohort study included patients with ALS across Canada with symptom onset up to three years. Those with a minimum 6-month edaravone exposure between 2017 and 2022 were enrolled in the interventional arm, and those without formed the control arm. The primary outcome of tracheostomy-free survival was compared between the two groups, accounting for age, sex, ALS-disease progression rate, disease duration, pulmonary vital capacity, bulbar ALS-onset, and presence of frontotemporal dementia or C9ORF72 mutation using inverse propensity treatment weights. Results: 182 patients with mean ± SD age 60±11 years were enrolled in the edaravone arm and 860 in the control arm (mean ± SD age 63±12 years). Mean ± SD time from onset to edaravone initiation was 18±10 months. Tracheostomy-free survival will be calculated. Conclusions: This study will provide evidence for edaravone effectiveness on tracheostomy-free survival in patients with ALS.
Background: What is the number and size of motor units, and axonal excitability profile in the early stages of muscle weakness in ALS compared to controls? Methods: We enrolled ALS patients with APB manual strength testing rated four or four-minus (ALS:4-arm) and four-plus (ALS:4+ arm) and control participants >35 years-old from the University of Toronto, University of Alberta and Universidade Federal de Sao Paulo. Mean±SD, one-way ANOVA and ANCOVA of ALSFRS-R, PUMN Score, MUNIX, MUSIX, and nerve-excitability testing using QTRAC TROND protocol were reported. Results: Twenty-five ALS patients and 63 controls were included. Mean MUNIX was significantly lower (p<0.0001) and MUSIX was significantly higher (p<0.001) in both ALS groups compared to controls. Mean strength-duration time constant in the ALS:4- arm (0.50ms±0.11; p<0.05) and superexcitability in both ALS groups (ALS:4- -29.05%±9.24, ALS:4+ -27.67%±8.03; p<0.05) were relatively increased, supporting axonal hyperexcitability. Conclusions: Significant motor unit loss measured by MUNIX is already present at the earliest detection of muscle weakness in ALS. Increased MUSIX and altered axonal physiology are associated with axonal sprouting and geometry change(1), along with ion channel dysfunction(2). Future trials targeting muscle weakness in ALS should consider the altered neuronal physiology during early disease stages and utilize neurophysiological biomarkers only in normal-to-mildly weak muscles.
Background: Burst suppression (BS) is an EEG pattern in which there are isoelectric periods interspersed with bursts of cortical activity. Targeting BS through anesthetic administration is used as a tool in the neuro-ICU but its relationship with cerebral blood flow (CBF) and cerebral autoregulation (CA) is unclear. We performed a systematic review investigating the effect of BS on CBF and CA in animals and humans. Methods: We searched MEDLINE, BIOSIS, EMBASE, SCOPUS, and Cochrane library from inception to July 2022. The data that were collected included study population, methods to induce and measure BS, and the effect on CBF and CA. Results: In total 45 animal and 26 human studies were included in the final review. In almost all the studies, BS was induced using an anaesthetic. In most of the animal and human studies, BS was associated with a decrease in CBF and cerebral metabolism, even if the mean arterial pressure remained constant. The effect on CA during periods of stress (hypercapnia, hypothermia, etc.) was variable. Conclusions: BS is associated with a reduction in cerebral metabolic demand and CBF, which may explain its usefulness in patients with brain injury. More evidence is needed to elucidate the connection between BS and CA.
Cognitive decline occurs commonly as people age. Despite the complexity of cellular mechanisms, oxidative stress is a critical contributor to age-associated cognitive impairment. Selenium plays an important role in antioxidant defense systems. The purpose of the present study was to assess the correlation between selenium intake and cognitive function among older adults. The participants were individuals ≥65 years old (n=1681) who participated in the 2011–2014 National Health and Nutrition Examination Survey (NHANES), a country-wide cross-sectional survey. Dietary selenium intake and adequacy were evaluated with 2 d of 24-h recalls and the estimated average requirement (EAR) cut-point method, respectively. Cognitive function was assessed with the Consortium to Establish a Registry for Alzheimer's Disease (CERAD) score, which was significantly higher when selenium intake was adequate. After adjusting for energy intake, the association was no longer significant. Inadequate intake of selenium is rare in the US and dependent on caloric intake in older adults.
We developed an agent-based model using a trial emulation approach to quantify effect measure modification of spillover effects of pre-exposure prophylaxis (PrEP) for HIV among men who have sex with men (MSM) in the Atlanta-Sandy Springs-Roswell metropolitan area, Georgia. PrEP may impact not only the individual prescribed, but also their partners and beyond, known as spillover. We simulated a two-stage randomised trial with eligible components (≥3 agents with ≥1 HIV+ agent) first randomised to intervention or control (no PrEP). Within intervention components, agents were randomised to PrEP with coverage of 70%, providing insight into a high PrEP coverage strategy. We evaluated effect modification by component-level characteristics and estimated spillover effects on HIV incidence using an extension of randomisation-based estimators. We observed an attenuation of the spillover effect when agents were in components with a higher prevalence of either drug use or bridging potential (if an agent acts as a mediator between ≥2 connected groups of agents). The estimated spillover effects were larger in magnitude among components with either higher HIV prevalence or greater density (number of existing partnerships compared to all possible partnerships). Consideration of effect modification is important when evaluating the spillover of PrEP among MSM.
Health services research (HSR) is affected by a widespread problem related to service terminology including non-commensurability (using different units of analysis for comparisons) and terminological unclarity due to ambiguity and vagueness of terms. The aim of this study was to identify the magnitude of the terminological bias in health and social services research and health economics by applying an international classification system.
Methods
This study, that was part of the PECUNIA project, followed an ontoterminology approach (disambiguation of technical and scientific terms using a taxonomy and a glossary of terms). A listing of 56 types of health and social services relevant for mental health was compiled from a systematic review of the literature and feedback provided by 29 experts in six European countries. The disambiguation of terms was performed using an ontology-based classification of services (Description and Evaluation of Services and DirectoriEs – DESDE), and its glossary of terms. The analysis focused on the commensurability and the clarity of definitions according to the reference classification system. Interrater reliability was analysed using κ.
Results
The disambiguation revealed that only 13 terms (23%) of the 56 services selected were accurate. Six terms (11%) were confusing as they did not correspond to services as defined in the reference classification system (non-commensurability bias), 27 (48%) did not include a clear definition of the target population for which the service was intended, and the definition of types of services was unclear in 59% of the terms: 15 were ambiguous and 11 vague. The κ analyses were significant for agreements in unit of analysis and assignment of DESDE codes and very high in definition of target population.
Conclusions
Service terminology is a source of systematic bias in health service research, and certainly in mental healthcare. The magnitude of the problem is substantial. This finding has major implications for the international comparability of resource use in health economics, quality and equality research. The approach presented in this paper contributes to minimise differentiation between services by taking into account key features such as target population, care setting, main activities and type and number of professionals among others. This approach also contributes to support financial incentives for effective health promotion and disease prevention. A detailed analysis of services in terms of cost measurement for economic evaluations reveals the necessity and usefulness of defining services using a coding system and taxonomical criteria rather than by ‘text-based descriptions’.
Subthreshold/attenuated syndromes are established precursors of full-threshold mood and psychotic disorders. Less is known about the individual symptoms that may precede the development of subthreshold syndromes and associated social/functional outcomes among emerging adults.
Methods
We modeled two dynamic Bayesian networks (DBN) to investigate associations among self-rated phenomenology and personal/lifestyle factors (role impairment, low social support, and alcohol and substance use) across the 19Up and 25Up waves of the Brisbane Longitudinal Twin Study. We examined whether symptoms and personal/lifestyle factors at 19Up were associated with (a) themselves or different items at 25Up, and (b) onset of a depression-like, hypo-manic-like, or psychotic-like subthreshold syndrome (STS) at 25Up.
Results
The first DBN identified 11 items that when endorsed at 19Up were more likely to be reendorsed at 25Up (e.g., hypersomnia, impaired concentration, impaired sleep quality) and seven items that when endorsed at 19Up were associated with different items being endorsed at 25Up (e.g., earlier fatigue and later role impairment; earlier anergia and later somatic pain). In the second DBN, no arcs met our a priori threshold for inclusion. In an exploratory model with no threshold, >20 items at 19Up were associated with progression to an STS at 25Up (with lower statistical confidence); the top five arcs were: feeling threatened by others and a later psychotic-like STS; increased activity and a later hypo-manic-like STS; and anergia, impaired sleep quality, and/or hypersomnia and a later depression-like STS.
Conclusions
These probabilistic models identify symptoms and personal/lifestyle factors that might prove useful targets for indicated preventative strategies.