Activating Adolescent and Young Adult Involvement with Cancer Care Responsibilities: A Dyadic Qualitative Study with Caregivers.

Purpose: Empowering adolescents and young adult (AYA) patients to be involved in cancer responsibilities (e.g., remembering medications), as opposed to solely relying on caregivers, may have important short- and long-term benefits for development and disease management. This study explored perceptions of AYA engagement with cancer-related responsibilities and plans for transferring these responsibilities from caregivers to AYAs. Methods: A total of 30 AYA-caregiver dyads (including 11 early adolescents, 10 adolescents, and 9 young adults who were receiving chemotherapy and/or radiation) jointly completed a semi-structured interview. Interviews assessed the present allocation of cancer responsibilities within the family, how cancer responsibilities were divided this way, and prompted a dyadic discussion to draft a plan to transfer a responsibility to the AYA in the future. Directed content analysis techniques were used to identify and organize relevant themes. Results: Themes showed that (1) cancer responsibilities were initially assumed "naturally" by caregivers, without much formal discussion; (2) greater AYA involvement in cancer care reflected AYA (e.g., age, willingness) and caregiver factors (e.g., knowledge/skills, anxiety); (3) over time, dyads mutually prioritized AYA engagement with cancer care; and (4) the need for more proactive clinical support with transferring care tasks to AYAs. Discussion: Caregivers play a key role in managing cancer care with or for AYAs, with the allocation of these responsibilities being influenced by several factors that can shift over time. Dyads typically viewed the transfer process as important but desired more clinical support. This reflects a potential self-management care gap to address in future studies and dyadic interventions.

Anxiety and depression following critical illness: A comparison of the recovery trajectories of patients and caregivers.

BACKGROUND: Following critical illness, family members are often required to adopt caregiving responsibilities. Anxiety and depression are common long term problems for both patients and caregivers. However, at present, it is not known how the trajectories of these symptoms compare between patients and caregivers. OBJECTIVES: The aim of this study was to investigate and compare the trajectories of anxiety and depression in patients and caregivers in the first year following critical illness. METHODS: This study analyses data from a prospective multicentre cohort study of patients and caregivers who underwent a complex recovery intervention following critical illness. Paired patients and caregivers were recruited. The Hospital Anxiety and Depression Scale was used to evaluate symptoms of anxiety and depression at three timepoints: baseline; 3 months; and 12 months in both patient and caregivers. A linear mixed-effects regression model was used to evaluate the trajectories of these symptoms over the first year following critical illness. RESULTS: 115 paired patients and caregivers, who received the complex recovery intervention, were recruited. There was no significant difference in the relative trajectory of depressive symptoms between patients and caregivers in the first 12 months following critical illness (p = 0.08). There was, however, a significant difference in the trajectory of anxiety symptoms between patients and caregivers during this time period (p = 0.04), with caregivers seeing reduced resolution of symptoms in comparison to patients. CONCLUSIONS: Following critical illness, symptoms of anxiety and depression are common in both patients and caregivers. The trajectory of symptoms of depression was similar between caregivers and patients; however, there was a significantly different recovery trajectory in symptoms of anxiety. Further research is required to understand the recovery pathway of caregivers in order to design effective interventions.

Voice hearers' explanations of trauma-related voices and processes of change throughout imagery rescripting: A qualitative exploration.

OBJECTIVES: Post-traumatic stress is common among people who hear voices (auditory verbal hallucinations), many of whom hear trauma-related voices, whereby voice content is related to past trauma. Preliminary evidence suggests that imagery rescripting (ImRs) may more effectively reduce post-traumatic stress and voices compared to treatments that are based on existing models of PTSD or positive symptoms. No known studies have explored the potential maintaining factors of trauma-related voices in relation to ImRs. We aimed to uncover insights into the factors that maintain trauma-related voices and how ImRs may influence such factors by exploring voice hearers' explanations of voices and experiences of change throughout ImRs. DESIGN: Thematic analytical methodology was used due to the study's critical epistemological framework. METHODS: Semi-structured interviews explored relationships between trauma and voices, and experiences of change and stability throughout ImRs in a transdiagnostic sample (N = 10) who underwent 10-18 weekly ImRs sessions. Thematic analysis was used to develop themes. RESULTS: Two themes captured explanations of voices, which suggested voices may have counterproductive protective functions. Three themes captured psychological experiences during ImRs, which reflected concepts such as freedom to experience emotions, and experiences of justice, closure and grieving. Three themes described the outcomes of ImRs, reflecting concepts such as increased confidence, coping, perceived safety and voices becoming less powerful. CONCLUSIONS: Trauma-related voices may have underlying protective functions and ImRs may support emotional expression, adaptive trauma re-appraisals and improve self-worth and coping self-efficacy. These change processes may have clinical implications in ImRs and other treatments for trauma-affected voice hearers.

Pathways from trauma to unusual perceptual experiences: Modelling the roles of insecure attachment, negative affect, emotion regulation and dissociation.

BACKGROUND: A range of traumas have been linked to voices (auditory verbal hallucinations) and unusual perceptual experiences (UPEs) in other perceptual-sensory domains. Models of PTSD and positive symptoms of psychosis are insufficient in explaining the relationship between trauma and voices. The trauma-related voices (TRV) model was developed to generate novel research in this area. AIMS: This study aimed to investigate pathways from trauma to the frequency of UPEs based on a subset of hypothesised relationships in the TRV model. MATERIALS: The PTSD Diagnostic Scale for DSM-5, State Adult Attachment Measure, Depression Anxiety and Stress Scales-21, Perth Emotion and Regulation Competency Inventory, Dissociative Experiences Measure Oxford, and Multi-modality Unusual Perceptual Experiences Questionnaire. METHODS: We used path analysis in a non-clinical sample (N = 528) to model indirect effects from diverse trauma experiences to the frequency of multi-sensory UPEs via a subset of mediators within the TRV model: insecure attachment, emotion regulation deficits, negative affect and dissociation. RESULTS: Our model was an excellent fit to the data and accounted for 37.1% of variance in UPE frequency, and all direct (ßs = .14-.61) and indirect pathways (ßs = .01-.08) were significant (ps < .001). DISCUSSION: Our findings suggest that insecure attachment may link diverse trauma experiences to emotion regulation deficits and negative affect, which are linked to UPE frequency via dissociation. CONCLUSION: Our findings provide preliminary evidence for a subset of relationships within the TRV model. Future studies are needed to gather stronger evidence of temporality and causation between these factors, and to test broader pathways within the TRV model.

The effect of positive and negative evaluation on state anxiety and repetitive negative thinking in social evaluative situations: An experimental study.

The Bivalent Fear of Evaluation (BFOE) Model suggests that fears of negative and positive evaluation are core cognitive vulnerability and maintenance factors for social anxiety disorder The aim of this study was to experimentally assess cognitive and emotional effects of positive and negative feedback in social anxiety. False positive or negative feedback (vs no feedback) was provided following a speech task to high and low socially anxious individuals to investigate impacts on state anxiety and repetitive negative thinking (N = 152, Mage = 22.13, 69 % female). Measures were completed prior to the speech and after the false feedback but prior to an anticipated discussion with the group about participants' feedback and performance. High socially anxious participants reporting higher state anxiety and repetitive negative thinking than low socially anxious participants. There were no feedback type by group interactions, indicating that high socially anxious individuals experienced heightened social anxiety and repetitive negative thinking regardless of feedback type (or the absence of feedback). Exploratory analyses revealed that state fear of negative evaluation but not state fear of positive evaluation uniquely predicted both outcomes. Implications for theory and clinical practice are discussed.

The relationship between pain, anxiety and depression in patients with post-intensive care syndrome.

PURPOSE: Survivors of critical illness frequently experience long-term symptoms including physical symptoms such as pain and emotional symptoms such as anxiety and depression. These symptoms frequently co-exist, however, at present there is limited understanding of these relationships. The aim of this study was to quantify the relationship between pain, anxiety and depression across the recovery trajectory. METHODS: This study is a secondary analysis of data from a multi-centre, prospective, cohort study which followed-up patients recovering from critical illness. Data was available at multiple time points and for 3 distinct cohorts. Structural equation modelling was used to investigate the relationship between outcome measures of pain, anxiety and depression. RESULTS: Data from 414 patients was analysed. Pain was significantly associated with both anxiety and depression in all cohorts and at all time points sampled. Path coefficients for the covariances between pain and depression ranged between 0.39 and 0.72 (p < 0.01). Path coefficients for the covariances between pain and anxiety ranged between 0.39 and 0.65 (p < 0.01). CONCLUSIONS: Pain, anxiety and depression are highly correlated in survivors of critical illness. Pharmacological treatments for pain management may be ineffective alone and further research is required to assess interventions targeting these symptoms in combination.

SIMplyBee: an R package to simulate honeybee populations and breeding programs.

BACKGROUND: The Western honeybee is an economically important species globally, but has been experiencing colony losses that lead to economical damage and decreased genetic variability. This situation is spurring additional interest in honeybee breeding and conservation programs. Stochastic simulators are essential tools for rapid and low-cost testing of breeding programs and methods, yet no existing simulator allows for a detailed simulation of honeybee populations. Here we describe SIMplyBee, a holistic simulator of honeybee populations and breeding programs. SIMplyBee is an R package and hence freely available for installation from CRAN http://cran.r-project.org/package=SIMplyBee . IMPLEMENTATION: SIMplyBee builds upon the stochastic simulator AlphaSimR that simulates individuals with their corresponding genomes and quantitative genetic values. To enable honeybee-specific simulations, we extended AlphaSimR by developing classes for global simulation parameters, SimParamBee, for a honeybee colony, Colony, and multiple colonies, MultiColony. We also developed functions to address major honeybee specificities: honeybee genome, haplodiploid inheritance, social organisation, complementary sex determination, polyandry, colony events, and quantitative genetics at the individual- and colony-levels. RESULTS: We describe its implementation for simulating a honeybee genome, creating a honeybee colony and its members, addressing haplodiploid inheritance and complementary sex determination, simulating colony events, creating and managing multiple colonies at the same time, and obtaining genomic data and honeybee quantitative genetics. Further documentation, available at http://www.SIMplyBee.info , provides details on these operations and describes additional operations related to genomics, quantitative genetics, and other functionalities. DISCUSSION: SIMplyBee is a holistic simulator of honeybee populations and breeding programs. It simulates individual honeybees with their genomes, colonies with colony events, and individual- and colony-level genetic and breeding values. Regarding the latter, SIMplyBee takes a user-defined function to combine individual- into colony-level values and hence allows for modeling any type of interaction within a colony. SIMplyBee provides a research platform for testing breeding and conservation strategies and their effect on future genetic gain and genetic variability. Future developments of SIMplyBee will focus on improving the simulation of honeybee genomes, optimizing the simulator's performance, and including spatial awareness in mating functions and phenotype simulation. We invite the honeybee genetics and breeding community to join us in the future development of SIMplyBee.

Evaluating pain in survivors of critical illness: the correlation between the EQ-5D-5L and the Brief Pain Inventory.

INTRODUCTION: Pain is a common and debilitating symptom in survivors of critical illness. The 'Core Outcome Set for Survivors of Acute Respiratory Failure' proposes that the pain and discomfort question of the EuroQol 5 Dimension 5 Level (EQ-5D-5L) could be used to assess pain in this group, however, it was recognised that further research is required to evaluate how this single question compares to other more detailed pain tools. This study aims to evaluate the relationship between the pain and discomfort question of the EQ-5D-5L and the Brief Pain Inventory (BPI) in survivors of critical illness. METHODS: This study retrospectively analysed paired EQ-5D-5L and BPI data extracted from a prospective, multicentre study evaluating the impact of a critical care recovery programme. 172 patients who received a complex recovery intervention and 108 patients who did not receive this intervention were included. Data were available for the intervention cohort at multiple time points, namely, baseline, 3 months and 12 months. While, data were available for the usual care cohort at a single time point (12 months). We assessed the correlation between the pain and discomfort question of the EQ-5D-5L and two separate components of the BPI: severity of pain and pain interference. RESULTS: Correlation coefficients comparing the pain and discomfort question of the EQ-5D-5L and the BPI pain severity score ranged between 0.73 (95% CI 0.63 to 0.80) and 0.80 (95% CI 0.72 to 0.86). Correlation coefficients comparing the pain and discomfort question of the EQ-5D-5L and the BPI pain interference score ranged between 0.71 (95% CI 0.62 to 0.79) and 0.83 (95% CI 0.76 to 0.88) across the various time points. CONCLUSIONS: The pain and discomfort question of the EQ-5D-5L correlates moderately well with a more detailed pain tool and may help to streamline assessments in survivorship studies. More in-depth tools may be of use where pain is the primary study outcome or a patient-reported concern.

Evaluation of a health and social care programme to improve outcomes following critical illness: a multicentre study.

RATIONALE: At present, clinicians aiming to support patients through the challenges after critical care have limited evidence to base interventions. OBJECTIVES: Evaluate a multicentre integrated health and social care intervention for critical care survivors. A process evaluation assessed factors influencing the programme implementation. METHODS: This study evaluated the impact of the Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme. We compared patients who attended this programme with a usual care cohort from the same time period across nine hospital sites in Scotland. The primary outcome was health-related quality of life (HRQoL) measured via the EuroQol 5-dimension 5-level instrument, at 12 months post hospital discharge. Secondary outcome measures included self-efficacy, depression, anxiety and pain. RESULTS: 137 patients who received the InS:PIRE intervention completed outcome measures at 12 months. In the usual care cohort, 115 patients completed the measures. The two cohorts had similar baseline demographics. After adjustment, there was a significant absolute increase in HRQoL in the intervention cohort in relation to the usual care cohort (0.12, 95% CI 0.04 to 0.20, p=0.01). Patients in the InS:PIRE cohort also reported self-efficacy scores that were 7.7% higher (2.32 points higher, 95% CI 0.32 to 4.31, p=0.02), fewer symptoms of depression (OR 0.38, 95% CI 0.19 to 0.76, p=0.01) and similar symptoms of anxiety (OR 0.58, 95% CI 0.30 to 1.13, p=0.11). There was no significant difference in overall pain experience. Key facilitators for implementation were: integration with inpatient care, organisational engagement, flexibility to service inclusion; key barriers were: funding, staff availability and venue availability. CONCLUSIONS: This multicentre evaluation of a health and social care programme designed for survivors of critical illness appears to show benefit at 12 months following hospital discharge.

A multicentre evaluation exploring the impact of an integrated health and social care intervention for the caregivers of ICU survivors.

BACKGROUND: Caregivers and family members of Intensive Care Unit (ICU) survivors can face emotional problems following patient discharge from hospital. We aimed to evaluate the impact of a multi-centre integrated health and social care intervention, on caregiver and family member outcomes. METHODS: This study evaluated the impact of the Intensive Care Syndrome: Promoting Independence and Return to Employment (InS:PIRE) programme across 9 sites in Scotland. InS:PIRE is an integrated health and social care intervention. We compared caregivers who attended this programme with a contemporary control group of ICU caregivers (usual care cohort), who did not attend. RESULTS: The primary outcome was anxiety measured via the Hospital Anxiety and Depression Scale at 12 months post-hospital discharge. Secondary outcome measures included depression, carer strain and clinical insomnia. A total of 170 caregivers had data available at 12 months for inclusion in this study; 81 caregivers attended the InS:PIRE intervention and completed outcome measures at 12 months post-hospital discharge. In the usual care cohort of caregivers, 89 completed measures. The two cohorts had similar baseline demographics. After adjustment, those caregivers who attended InS:PIRE demonstrated a significant improvement in symptoms of anxiety (OR: 0.42, 95% CI: 0.20-0.89, p = 0.02), carer strain (OR: 0.39; 95% CI: 0.16-0.98 p = 0.04) and clinical insomnia (OR: 0.40; 95% CI: 0.17-0.77 p < 0.001). There was no significant difference in symptoms of depression at 12 months. CONCLUSIONS: This multicentre evaluation has shown that caregivers who attended an integrated health and social care intervention reported improved emotional health and less symptoms of insomnia, 12 months after the delivery of the intervention.

A narrative review of psychological theories of post-traumatic stress disorder, voice hearing, and other psychotic symptoms.

BACKGROUND: Most voice hearers report childhood trauma. Many voice hearers report comorbid post-traumatic stress symptoms and that the content of their voices (auditory verbal hallucinations) is directly (voices repeat phrases spoken by perpetrators) or indirectly (voice content and trauma is thematically similar) related to their trauma. The factors that maintain trauma-related voices are unknown, and there is limited research in this area. This study aimed to identify potential maintaining factors of trauma-related voices by reviewing models of post-traumatic stress disorder (PTSD) and positive symptoms of psychosis. METHOD: Models of PTSD and positive symptoms were reviewed to identify potential factors that are unique and common to both sets of symptoms. RESULTS: We reviewed 10 models of PTSD, 4 models of positive symptoms, and 2 trauma-informed models of voice hearing. One model provided a theoretical explanation of different types of trauma-related voices. Twenty-one factors were extracted from 16 theoretical models. No existing model incorporated all these factors. DISCUSSION: Existing PTSD and positive symptom models present a range of common and unique factors. There may be value in extending existing integrative models to include a broader range of potential factors that could explain different pathways to, and expressions of, trauma-related voices. A future research agenda is presented to investigate how such an extension could lead to more complete individualized case formulations and targeted treatments.

Long-term outcomes following severe COVID-19 infection: a propensity matched cohort study.

BACKGROUND: There are limited data describing the long-term outcomes of severe COVID-19. We aimed to evaluate the long-term psychosocial and physical consequences of severe COVID-19 for patients. METHODS: We conducted a multicentre observational cohort study; between 3 and 7 months posthospital discharge, patients who had been admitted to critical care due to severe COVID-19 were invited to an established recovery service. Standardised questionnaires concerning emotional, physical and social recovery, including information on employment, were completed by patients. Using propensity score matching, we explored outcomes between patients admitted to critical care with and without COVID-19, using data from the same recovery programme. RESULTS: Between July 2020 and December 2020, 93 patients who had been admitted to critical with COVID-19 participated. Emotional dysfunction was common: 46.2% of patients had symptoms of anxiety and 34.4% symptoms of depression. At follow-up 53.7% of previously employed patients had returned to employment; there was a significant difference in return to employment across the socio-economic gradient, with lower numbers of patients from the most deprived areas returning to employment (p=0.03). 91 (97.8%) COVID-19 patients were matched with 91 non-COVID-19 patients. There were no significant differences in any measured outcomes between the two cohorts. INTERPRETATION: Emotional and social problems are common in survivors of severe COVID-19 infection. Coordinated rehabilitation is required to ensure patients make an optimal recovery.

Audiovestibular Quantification in Rare Third Window Disorders in Children.

Third window disorders are structural abnormalities in the bony otic capsule that establish a connection between the middle/inner ear or the inner ear/cranial cavity. Investigated extensively in adults, they have hardly been studied in children. This study is a retrospective study of children (aged 5-17 years) diagnosed with rare third window disorders (third window disorders reported rarely or not reported in children) in a tertiary pediatric vestibular unit in the United Kingdom. It aimed to investigate audiovestibular function in these children. Final diagnosis was achieved by high resolution CT scan of the temporal bones. Of 920 children attending for audiovestibular assessment over a 42 month period, rare third windows were observed in 8 (<1%). These included posterior semicircular canal dehiscence (n = 3, 0.3%), posterior semicircular canal thinning (n = 2, 0.2%), X linked gusher (n = 2, 0.2%), and a combination of dilated internal auditory meatus/irregular cochlear partition/deficient facial nerve canal (n = 1, 0.1%). The majority of them (87.5%) demonstrated a mixed/conductive hearing loss with an air-bone gap in the presence of normal tympanometry (100%). Transient otoacoustic emissions were absent with a simultaneous cochlear pathology in 50% of the cohort. Features of disequilibrium were observed in 75% and about a third showed deranged vestibular function tests. Video head impulse test abnormalities were detected in 50% localizing to the side of the lesion. Cervical vestibular evoked myogenic potential test abnormalities were observed in all children in the cohort undergoing the test where low thresholds and high amplitudes classically found in third window disorders localized to the side of the defects in 28.5%. In the series, 71.4% also demonstrated absent responses/amplitude asymmetry, some of which did not localize to the ipsilesional side. Two children presented with typical third window symptoms. This study observes 2 new rare pediatric third window phenotypes and the presence of a cochlear hearing loss in these disorders. It emphasizes that these disorders should be considered as an etiology of hearing loss/disequilibrium in children. It also suggests that pediatric third window disorders may not present with classical third window features and are variable in their presentations/audiovestibular functions.

Imagery Rescripting for Anxiety Disorders and Obsessive-Compulsive Disorder: Recent Advances and Future Directions.

PURPOSE OF REVIEW: This review describes imagery rescripting (ImRs) and its clinical application to anxiety disorders and obsessive-compulsive disorder (OCD). Variations in ImRs delivery, clinical evidence, and theories of potential mechanisms of change are also reviewed. Finally, we propose a future research agenda. RECENT FINDINGS: There is some evidence that ImRs affects memory processes and schemas. ImRs is associated with reductions in cognitive-affective, physiological and behavioural symptoms of social anxiety disorder and reductions in OCD-related distress and OCD symptoms. ImRs for other anxiety disorders has not been evaluated. While ImRs appears to be an effective intervention for social anxiety disorder and OCD, more research is needed to (a) systematically compare ImRs to established interventions, (b) evaluate ImRs for other anxiety disorders, (c) test theorized mechanisms of change, and (d) evaluate the impact of moderating factors and treatment variations on therapeutic outcomes.

The impact of methodological and measurement factors on transdiagnostic associations with intolerance of uncertainty: A meta-analysis.

Intolerance of uncertainty is a dispositional trait associated with a range of psychological disorders, but the influence of methodological factors on theses associations remains unknown. The first aim of this meta-analysis was to quantify the strengths of the association between IU and symptoms of generalised anxiety disorder, social anxiety disorder, panic disorder, agoraphobia, obsessive compulsive disorder, depression, and eating disorders. The second aim was to assess the influence of methodological factors on these relationships, including clinical (vs. non-clinical) status, age group, sex, IU measure, and symptom measure. We extracted 181 studies (N participants = 52,402) reporting 335 independent effect sizes (Pearson's r). Overall, there was a moderate association between IU and symptoms (r = 0.51, 95% CI = 0.50-0.52), although heterogeneity was high (I2 = 83.50, p < .001). Some small but significant moderator effects emerged between and within disorders. Effect sizes were not impacted by sample size. The results indicate that IU has robust, moderate associations with a range of disorder symptoms, providing definitive evidence for the transdiagnostic nature of IU.

Unsuitable for the intensive care unit: what happens next?

CONTEXT: In recent years numbers of referrals to intensive care units (ICU) throughout the United Kingdom has been increasing. A number of referrals to the ICU are considered to be inappropriate for a variety of reasons, including those patients who are felt to be either too well for admission, or have comorbidities making survival unlikely and aggressive interventions unsuitable. OBJECTIVES: This study aims to examine the outcomes and symptoms in those patients who are unsuitable for admission to ICU. By looking at this population we hope to ascertain if this is an at-risk group in terms of symptomatic or care needs at the end of life. METHODS: This was as an observational prospective study with the sample population identified via the ICU referrals process. All patients referred to the ICU for admission but deemed unsuitable were recorded and followed up by researchers on the wards. RESULTS: Fifty patients were identified between January and April 2009. Outcomes at one week were split between "death" (34%), "discharge" (24%), and ongoing illness/rehabilitation (40%). Levels of comorbidity were high, with a corresponding prevalence of severe breathlessness in all outcome groups. CONCLUSION: The results suggest there are small numbers of patients with uncontrolled symptoms who could benefit from specialist input from the palliative care team. The identification of the imminently dying should facilitate appropriate communication of this by clinical staff and allow the relevant social, psychological, and spiritual preparations for death that are the hallmark of good care of the dying.