Factors predicting rehabilitation outcomes after severe acquired brain injury in trauma, stroke and anoxia populations: A cohort study.

Severe acquired brain injury has long-term physical and cognitive effects. Identifying patient variables predictive of recovery in different brain injury populations would generate improved prognostic information and help rehabilitation teams set appropriate therapeutic goals. This cohort study of 447 NHS neurorehabilitation inpatients aimed to identify functional and cognitive predictors of recovery following severe acquired brain injury caused by trauma, stroke and anoxia. Motor and cognitive impairment ratings were collected at admission and discharge using the Functional Independence Measure and Functional Assessment Measure (FIM+FAM), and injury-related and demographic data were collated from medical records. Predictors of physical, cognitive and overall recovery were identified via hierarchical regression analyses. Several key findings emerged. Firstly, on-admission motor skills predicted functional and overall outcomes across groups. Secondly, on-admission social interaction skills predicted cognitive discharge outcomes in stroke and trauma, and overall outcomes for stroke, but did not predict anoxia outcomes. Thirdly, age predicted all forms of recovery for stroke only. Further group-specific factors were also identified as predicting motor and cognitive recovery, indicating that factors key to the rehabilitation trajectory may differ between populations. These variables should be considered in rehabilitation goal planning, although further research is required to explore their contributions to recovery.

The Experience of Self-conscious Emotions in Inflammatory Bowel Disease: A Thematic Analysis.

Few studies have investigated emotional experiences in people living with inflammatory bowel disease (IBD). However, self-conscious emotions, including embarrassment and shame, are indicated as a key factor in delayed help-seeking for bowel symptoms, which can result in poorer health outcomes. This study aimed to explore experiences of self-conscious emotions among people with IBD. Fifteen participants were recruited from outpatient IBD clinics and patient groups, and engaged in semi-structured interviews about their experiences of IBD-related self-consciousness. Data were analysed using thematic analysis following an inductive, semantic approach and conducted from a critical realist position. The analysis generated two themes, each with three sub-themes, which captured self-conscious emotions in relation to experiences which threatened participants' preferred identities. The first theme, 'Lack of control' encapsulated participants' distress relating to fundamental alteration in self-perception, and their attempts to mitigate this. The second, 'Lack of understanding' captured distress associated with awareness of being unfairly judged by other people. Clinical implications are identified, including consideration of therapeutic approaches which target self-conscious emotions such as shame, and continued societal efforts to educate others about invisible disabilities such as IBD. Experiences which threatened participants' identities were implicated in the generation of self-conscious emotions; these should be considered in work with clients with IBD. Future research should target further investigation of these constructs.

Assessing Mental Health Difficulties of Persons With Huntington's Disease: Does Informant Presence Make a Difference?

OBJECTIVE: Persons with Huntington's disease (HD) often have communication difficulties and cognitive impairments, making mental health assessment difficult. Informants close to the patient are often included in assessments. The authors investigated effects of informant presence during assessment of persons with HD. METHODS: Data for four subsamples from ENROLL-HD were examined: manifest for HD (N=4,109), premanifest (N=1,790), genotype negative (N=1,041), and family members with no genetic risk (N=974). Assessment interviews with and without an informant present were identified, and the subsamples were compared on three subscales of the short-form Problem Behaviors Assessment: affect, apathy, and irritability. Differences in scores between participant-only and informant-present interviews were examined via multiple regression, controlling for demographic, disease-related, and individual confounds. RESULTS: Significant differences in apathy and irritability scores were found between participant-only and informant-present conditions for the premanifest, manifest, and genotype-negative subsamples. Affect subscale scores were not influenced by informant presence. When the analysis controlled for confounds, informant presence significantly increased irritability scores in the manifest, and genotype-negative groups and significantly increased apathy scores in the manifest group. CONCLUSIONS: Apathy may have been systemically underreported in participant-only interviews, which supports previous findings that persons with HD underreport mental health symptoms. When an informant was present, irritability scores were higher for both HD and non-HD individuals, suggesting that underreporting via self-report may be attributable to non-HD factors. Informant contributions to apathy assessments may be particularly important for persons with HD. Clinicians should note potential underreporting regarding irritability and affect, which was not remediated by informant presence.

A Factor Analysis of Functional Independence and Functional Assessment Measure Scores Among Focal and Diffuse Brain Injury Patients: The Importance of Bifactor Models.

OBJECTIVE: To explore the factor structure of the UK Functional Independence Measure and Functional Assessment Measure (FIM+FAM) among focal and diffuse acquired brain injury patients. DESIGN: Criterion standard. SETTING: A National Health Service acute acquired brain injury inpatient rehabilitation hospital. PARTICIPANTS: Referred sample of adults (N=447) admitted for inpatient treatment following an acquired brain injury significant enough to justify intensive inpatient neurorehabilitation INTERVENTION: Not applicable. OUTCOME MEASURE: Functional Independence Measure and Functional Assessment Measure. RESULTS: Exploratory factor analysis suggested a 2-factor structure to FIM+FAM scores, among both focal-proximate and diffuse-proximate acquired brain injury aetiologies. Confirmatory factor analysis suggested a 3-factor bifactor structure presented the best fit of the FIM+FAM score data across both aetiologies. However, across both analyses, a convergence was found towards a general factor, demonstrated by high correlations between factors in the exploratory factor analysis, and by a general factor explaining the majority of the variance in scores on confirmatory factor analysis. CONCLUSIONS: Our findings suggested that although factors describing specific functional domains can be derived from FIM+FAM item scores, there is a convergence towards a single factor describing overall functioning. This single factor informs the specific group factors (eg, motor, psychosocial, and communication function) after brain injury. Further research into the comparative value of the general and group factors as evaluative/prognostic measures is indicated.

Correlation between neurobehavioural assessment and functional magnetic resonance imaging in the diagnosis of prolonged disorders of consciousness.

The misdiagnosis rate of prolonged disorders of consciousness remains at approximately 40%, owing to overlap between diagnostic criteria and inconsistencies in patient responses. Improved accuracy is essential for the appropriate provision of treatment and rehabilitation. Neuroimaging may provide additional diagnostic information to standard neurobehavioural assessment, enabling identification of higher levels of awareness. In this study, the Sensory Tool to Assess Responsiveness (STAR) neurobehavioural assessment was used to assess the level of awareness of 19 patients with prolonged disorders of consciousness. Patients also completed an fMRI diagnostic assessment. The degree of concordance between fMRI and STAR diagnoses was substantial, despite significant delays for some patients between the two assessments. Discrepant diagnoses may relate to this delay or to the inconsistency of responses which characterise the minimally conscious state. The findings indicate that fMRI neuroimaging and STAR neurobehavioural assessment, while largely concordant, may identify different facets of awareness in some patients, which supports the use of both types of assessment in forming a diagnosis. Recommendations for future research include minimal delays between neurobehavioural and neuroimaging assessment, larger patient cohorts, and the use of multiple shorter fMRI assessments which provide more opportunities for patients to exhibit relevant behaviours.

Neurobehavioural assessment and diagnosis in disorders of consciousness: a preliminary study of the Sensory Tool to Assess Responsiveness (STAR).

The Sensory Tool to Assess Responsiveness (STAR) is an interdisciplinary neurobehavioural diagnostic tool for individuals with prolonged disorders of consciousness. It utilises current diagnostic criteria and is intended to improve upon the high misdiagnosis rate in this population. This study assesses the inter-rater reliability of the STAR and its diagnostic validity in comparison with the Coma Recovery Scale-Revised (CRS-R) and the Wessex Head Injury Matrix (WHIM). Participants were patients with severe acquired brain injury resulting in a disorder of consciousness, who were admitted to the Royal Leamington Spa Rehabilitation Hospital between 1999 and 2009. Patients underwent sensory stimulation sessions during their period of admission, which were recorded on video. Using this footage, patients were re-assessed for this study using the STAR, WHIM and CRS-R criteria. The STAR demonstrated "moderate" inter-rater reliability, "substantial" diagnostic agreement with the CRS-R, and "moderate" agreement with the WHIM. There were no significant differences between diagnoses assigned by the different assessments. The STAR demonstrated a good degree of inter-rater reliability in identification of diagnoses for patients with disorders of consciousness. The diagnostic outcomes of the STAR agreed at a good level with the CRS-R, moderately with the WHIM, and did not significantly differ from either. This demonstrates the reliability and validity of the STAR, showing its appropriateness for clinical use. Future longitudinal studies and research into the STAR's applicability in long-stay rehabilitation are indicated.

Assessing progress in managing and improving quality in nascent integrated care systems in England.

OBJECTIVES: In 2022, England embarked on an ambitious reorganisation to produce an integrated health and care system, intended also to maximise population health. The newly created integrated care systems (ICSs) aim to improve quality of care, by achieving the best outcomes for individuals and populations through the provision of evidence-based services. An emerging approach for managing quality in organisations is the Quality Management System (QMS) framework. Using the framework, this study assessed how ICSs are managing and improving quality. METHODS: Four ICSs were purposively sampled, with the data collected between November 2021 and May 2022. Semi-structured interviews with system leaders (n=60) from health and social care, public health and local representatives were held. We also observed key ICS meetings and reviewed relevant documents. A thematic framework approach based on the QMS framework was used to analyse the data. RESULTS: The ICSs placed an emphasis on population health, reducing inequity and improving access. This represents a shift in focus from the traditional clinical approach to quality. There were tensions between quality assurance and improvement, with concerns that a narrow focus on assurance would impede ICSs from addressing broader quality issues, such as tackling inequalities and unwarranted variation in care and outcomes. Partnerships, a key enabler for integration, was seen as integral to achieving improvements in quality. Overall, the ICSs expressed concerns that any progress made in quality development and in improving population health would be tempered by unprecedented system pressures. CONCLUSION: It is unclear whether ICSs can achieve their ambition. As they move away from an assurance-dominated model of quality to one that emphasises openness, learning and improvement, they must simultaneously build the digital infrastructure, staff expertise and culture to support such a shift.

Efficient word segmentation is preserved in older adult readers: Evidence from eye movements during Chinese reading.

College-aged readers use efficient strategies to segment and recognize words in naturally unspaced Chinese text. Whether this capability changes across the adult lifespan is unknown, although segmenting words in unspaced text may be challenging for older readers due to visual and cognitive declines in older age, including poorer parafoveal processing of upcoming characters. Accordingly, we conducted two eye movement experiments to test for age differences in word segmentation, each with 48 young (18-30 years) and 36 older (65+ years) native Chinese readers. Following Zhou and Li (2021), we focused on the processing of "incremental" three-character words, like (meaning "kindergartens"), which contain an embedded two-character word (e.g., , meaning "children"). In Experiment 1, either the three-character word or its embedded word was presented as the target word in sentence contexts where the three-character word always was plausible, and the embedded word was either plausible or implausible. Both age groups produced similar plausibility effects, suggesting age constancy in accessing the embedded word early during ambiguity processing before ultimately assigning an incremental word analysis. Experiment 2 provided further evidence that both younger and older readers access the embedded word early during ambiguity processing, but rapidly select the appropriate (incremental) word. Crucially, the findings suggest that word segmentation strategies do not differ with age. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Mental health symptoms among those affected by Huntington's disease: A cross-sectional study.

BACKGROUND: Although cognitive and motor symptoms of Huntington's disease (HD) are associated with disease progression, the underlying causes of psychological symptoms are not as clearly understood. Recent evidence suggests that some mental health difficulties experienced by people with HD are shared by noncarriers within HD families. Accordingly, there is a need to evaluate potential systemic contributors to HD mental distress, to support meaningful interventions for psychological symptoms in people with HD and affected families. METHOD: We used short-form Problem Behaviors Assessment mental health symptom data from the international Enroll-HD data set to characterize mental health symptoms across eight HD groups: Stages 1-5, premanifest and genotype-negative individuals, and family controls (n = 8567) using chi-square analysis with post hoc comparisons. RESULTS: We identified that people with later-stage HD (Stages 2-5) had significantly higher apathy, obsessive-compulsiveness, and (from Stage 3) disorientation than the remaining groups at a medium effect size, and that these findings largely held across three measure administrations over time. CONCLUSIONS: These findings highlight the critical symptoms in manifest HD from Stage 2 onward, but also demonstrate that crucial symptoms such as depression, anxiety, and irritability are present across HD-affected groups (including noncarriers of the gene expansion). The outcomes highlight a need for specific clinical management of later-stage HD psychological symptoms, and for systemic support across affected families.

Experiences of stigma in people with epilepsy: A meta-synthesis of qualitative evidence.

OBJECTIVE: Stigma is reported to cause as much distress and effect on quality of life for individuals with epilepsy as the physical symptoms of seizures. Existing quantitative reviews have focused on describing levels of stigma in epilepsy, but no qualitative review has been undertaken despite the increasing number of relevant studies. We provide a qualitative synthesis to aid the understanding of stigma experiences in adults with epilepsy across different sociocultural contexts. METHODS: A systematic database search yielded an initial set of 3,032 relevant papers, of which 28 were included. A meta-synthesis was conducted according to a meta-ethnographic approach which has been adapted for health research. RESULTS: Five themes were generated: 1) Societal negative perceptions of epilepsy result in discrimination and rejection; 2) Internal attributions of blame lead to negative self-perception and shame; 3) Stigma impacts everyday life and contributes to reliance on others; 4) Stigma is managed through concealment and avoidance; 5) Support from others is beneficial but dependant on own and others' understandings of epilepsy. These themes highlighted the key individual experiences of epilepsy stigma, which appeared to some degree culture-specific. Culturally-informed misconceptions of epilepsy were readily internalised, resulting in emotional challenges and affecting participants' lives. Strategies for coping with this were also described. SIGNIFICANCE: This synthesis characterised the experiences of stigma among adults with epilepsy and highlighted key similarities and differences in these experiences across sociocultural contexts. Educational programmes to inform communities about epilepsy hold importance going forward.

The Impact Of Patient Suicide on Doctors and Nurses: A Critical Interpretive Meta-Synthesis.

OBJECTIVE: To provide a conceptual overview of how medical doctors and nurses experience patient suicide. METHOD: A systematic search identified ten qualitative papers for this interpretive meta-synthesis. Constructs were elicited and synthesized via reciprocal translational analysis. RESULTS: Findings comprised four inter-related themes: (1) Intrinsic but taboo: patient suicide perceived as inevitable yet difficult to discuss. (2) Significant emotional impact: clinicians deeply affected, with resilience important for mitigating impact. (3) Failure and accountability: intense self-scrutiny, guilt and shame, with blame attributed differently across professions. (4) Legacy of patient suicide: opportunities for growth but lack of postvention guidance. CONCLUSIONS: Patient suicide affects clinicians profoundly. Further research should evaluate postvention procedures to inform effective guidance and support, acknowledging professional differences.HighlightsPatient suicide profoundly affects doctors and nurses as "suicide survivors."Despite common themes, professions differed in blame attributions.Organizations must develop postvention responses to meet clinicians' pastoral needs.

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington's Disease: A Descriptive, Evidence-Based Model.

Huntington's disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual's difficulties) is a helpful tool to conceptualise patients' wellbeing, a specific formulation framework has not yet been developed for HD. However, evidence has shown that formulation can help guide clinical interventions and increase consistency of approach across multi-disciplinary teams, refine risk management, and improve staff or carers' empathic skills and understanding of complex presentations. As a consequence, this paper proposes a new clinical formulation model for understanding distress among people with HD, based on a biopsychosocial framework. More specifically, this includes key elements centring on an individual's past experience and personal narratives, as well as anticipatory cognitions and emotions about the future. In-depth discussions regarding the components of the model and their importance in HD formulations are included, and a fictional yet representative case example is presented to illustrate their application within the context of personalised care.

Self-compassion, sleep quality and psychological well-being in type 2 diabetes: a cross-sectional study.

INTRODUCTION: Low self-compassion and poor sleep quality have been identified as potential key predictors of distress in type 2 diabetes (T2D). This study investigated relationships between sleep behaviors (sleep duration, social jetlag and daytime sleepiness), diabetes-related distress (DRD) and self-compassion in people with T2D. RESEARCH DESIGN AND METHODS: This cross-sectional study used data from 467 people with T2D derived from self-report questionnaires, accelerometer-assessed sleep measures and demographic information (clinicaltrials.gov registration: NCT02973412). All participants had a diagnosis of T2D and no comorbid sleep disorder (excluding obstructive sleep apnea). Hierarchical multiple regression and mediation analysis were used to quantify relationships between self-compassion, sleep variables and DRD. RESULTS: Significant predictors of DRD included two negative subscales of the Self-Compassion Scale (SCS), and daytime sleepiness. The 'overidentified' and 'isolation' SCS subscales were particularly important in predicting distress. Daytime sleepiness also partially mediated the influence of self-compassion on DRD, potentially through self-care around sleep. CONCLUSIONS: Daytime sleepiness and negative self-compassion have clear associations with DRD for people with T2D. The specific negative subscale outcomes suggest that strengthening individuals' ability to mindfully notice thoughts and experiences without becoming enmeshed in them, and reducing a sense of separateness and difference, might be key therapeutic targets for improving well-being in T2D. Psychological interventions should include approaches focused on reducing negative self-compassion and improving sleep behavior. Equally, reducing DRD may carry beneficial outcomes for sleep and self-compassion. Further work is however crucial to establish causation and long-term impact, and for development of relevant clinical resources.

The structure of mental health symptoms in Huntington's disease: Comparisons with healthy populations.

INTRODUCTION: Mental health difficulties are common among people with Huntington's disease (HD). However, such difficulties are only weakly associated with HD progression, suggesting their causes may be multifactorial rather than purely disease-related. Genetically unaffected family members have been shown to experience similar levels of mental distress to people with HD, potentially due to systemic stressors and life disruption. These factors may also influence mental wellbeing in people with HD. Accordingly, this study aimed to compare patterns and occurrence of mental distress between people with HD and genetically unaffected control groups, to determine systemic and environmental contributions to HD-related distress. METHOD: Exploratory and confirmatory factor analysis was used to compare the structure of mental distress in 5,294 individuals from four groups: manifest or premanifest HD, family control, and genotype-negative. Data were from the Enroll-HD study, using scores from the Problem Behaviors Assessment, the Hospital Anxiety and Depression Scale, and the Snaith Irritability Scale. We then evaluated consistency of the identified constructs over three annual assessments using analysis of variance. RESULTS: Four factors consistently emerged across all groups, comprising depression, anxiety, temper and self-harm; these remained stable across time. People with HD did not report significantly different anxiety scores to control groups. The manifest group reported significantly higher depression, temper and self-harm than the genotype-negative group, but only differed in some cases from family-controls. CONCLUSIONS: The findings suggest greater similarity in the severity and structure of mental health symptoms between people with and without HD than previously believed. This suggests contributions from systemic as well as genetic factors in families affected by HD, especially in terms of anxiety symptoms.

Psychological interventions for people with Parkinson's disease in the early 2020s: Where do we stand?

PURPOSE: To explore the heterogeneity of the literature on psychological interventions for psychological difficulties in people with Parkinson's disease (PD). METHODS: A scoping review was performed across five major databases (MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library) up to June 2020. RESULTS: From an initial return of 4911 citations, 56 studies were included, of which 21 were RCTs. A relatively wide range of therapeutic models have been adopted with people with PD, from common therapies such as cognitive behavioural therapy (CBT) and mindfulness, to less frequent approaches, for example, acceptance and commitment therapy (ACT) and psychodrama. The clinical implications of the findings are discussed, and suggestions are provided for future research on intervention studies and key psychological outcomes. CONCLUSIONS: CBT appears to be effective in treating depression and sleep disorders in people with PD, while psychoeducation programmes alone should be avoided. The use of CBT to improve anxiety, quality of life, and impulse control, as well mindfulness-based interventions, should be undertaken with some caution because of insufficient research and inconsistent results. As we enter the new decade, more high-quality evidence is required for psychological interventions in people with PD in general and to corroborate preliminary positive findings on the adoption of less frequent approaches such as ACT. PRACTITIONER POINTS: Parkinson's disease is a progressive neurodegenerative condition associated with several psychological difficulties which be targeted by psychological interventions. Currently, cognitive behavioural therapy (CBT) can be recommended to treat depression and sleep disorders in people with Parkinson's, while psychoeducation alone should be avoided. Caution is advised regarding the use of CBT and mindfulness-based interventions to improve anxiety, quality of life, and impulse control. Further evidence is required for less common approaches, such as acceptance and commitment therapy, psychodrama, and EMDR.

Validity of irritability in Huntington's disease: A scoping review.

PURPOSE: To scope the literature concerning irritability in Huntington's disease to determine whether or not irritability is a valid and meaningful construct within this population. METHOD: A scoping literature review was conducted based on findings from a search of five databases (Academic Search Ultimate, PsycINFO, CINAHL, Scopus and Web of Science) in November 2018. From an initial return of 453 papers, 40 were found suitable for review. RESULTS: Review of the 40 studies highlighted several aspects of irritability in people with HD which influence its validity as an independent construct in context of the disease. While various measures are used to assess irritability, a gold standard has yet to be identified and consequently irritability is assessed inconsistently across the literature. In addition, the results suggest that irritability may not reflect pathological disease processes in HD, but rather comprises a multidimensional construct which appears to be strongly associated with other psychological difficulties such as depression and anxiety. CONCLUSIONS: The current concept of irritability in people with HD continues to lack a general consensus in the clinical literature, in terms of both operationalisation and assessment. Consequently, further research is warranted in order to determine the extent to which irritability is a valid construct within the context of HD, including its associated behavioural, cognitive and affective dimensions.

PEX14 binding to Arabidopsis PEX5 has differential effects on PTS1 and PTS2 cargo occupancy of the receptor.

PEX5 acts as a cycling receptor for import of PTS1 proteins into peroxisomes and as a co-receptor for PEX7, the PTS2 receptor, but the mechanism of cargo unloading has remained obscure. Using recombinant protein domains we show PEX5 binding to the PEX14N-terminal domain (PEX14N) has no effect on the affinity of PEX5 for a PTS1 containing peptide. PEX5 can form a complex containing both recombinant PTS1 cargo and endogenous PEX7-thiolase simultaneously but isolation of the complex via the PEX14 construct resulted in an absence of thiolase, suggesting a possible role for PEX14 in the unloading of PTS2 cargos.