Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Purpose: Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Methods: Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Results: Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Conclusion: Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Implications for cancer survivors: Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

A qualitative investigation into the role of illness perceptions in endometriosis-related quality of life.

Endometriosis is related to adverse quality of life (QoL) and wellbeing outcomes. The way in which endometriosis is perceived by individuals experiencing the condition has not been directly considered, yet illness perceptions (IPs) are predictors of QoL in several chronic conditions. This research aims to gain an understanding of the IPs held by individuals experiencing endometriosis and their impact on QoL. Semi-structured, one-to-one interviews with 30 UK-based participants sought to gain an understanding of participant experiences and perceptions linked to endometriosis. Three themes were constructed through reflexive thematic analysis: a life disrupted; lost sense of self; and complex emotional responses. Largely negative IPs were held by individuals experiencing endometriosis which, along with endometriosis-specific symptoms, fuelled fears for the future and reduced QoL. IP-based interventions may support the QoL of those experiencing endometriosis whilst effective treatment is sought.

Epilepsy and sudden unexpected death in epilepsy in a mouse model of human SCN1B-linked developmental and epileptic encephalopathy.

Voltage-gated sodium channel ß1 subunits are essential proteins that regulate excitability. They modulate sodium and potassium currents, function as cell adhesion molecules and regulate gene transcription following regulated intramembrane proteolysis. Biallelic pathogenic variants in SCN1B, encoding ß1, are linked to developmental and epileptic encephalopathy 52, with clinical features overlapping Dravet syndrome. A recessive variant, SCN1B-c.265C>T, predicting SCN1B-p.R89C, was homozygous in two children of a non-consanguineous family. One child was diagnosed with Dravet syndrome, while the other had a milder phenotype. We identified an unrelated biallelic SCN1B-c.265C>T patient with a clinically more severe phenotype than Dravet syndrome. We used CRISPR/Cas9 to knock-in SCN1B-p.R89C to the mouse Scn1b locus (Scn1bR89/C89). We then rederived the line on the C57BL/6J background to allow comparisons between Scn1bR89/R89 and Scn1bC89/C89 littermates with Scn1b+/+ and Scn1b-/- mice, which are congenic on C57BL/6J, to determine whether the SCN1B-c.265C>T variant results in loss-of-function. Scn1bC89/C89 mice have normal body weights and ∼20% premature mortality, compared with severely reduced body weight and 100% mortality in Scn1b-/- mice. ß1-p.R89C polypeptides are expressed in brain at comparable levels to wild type. In heterologous cells, ß1-p.R89C localizes to the plasma membrane and undergoes regulated intramembrane proteolysis similar to wild type. Heterologous expression of ß1-p.R89C results in sodium channel α subunit subtype specific effects on sodium current. mRNA abundance of Scn2a, Scn3a, Scn5a and Scn1b was increased in Scn1bC89/C89 somatosensory cortex, with no changes in Scn1a. In contrast, Scn1b-/- mouse somatosensory cortex is haploinsufficient for Scn1a, suggesting an additive mechanism for the severity of the null model via disrupted regulation of another Dravet syndrome gene. Scn1bC89/C89 mice are more susceptible to hyperthermia-induced seizures at post-natal Day 15 compared with Scn1bR89/R89 littermates. EEG recordings detected epileptic discharges in young adult Scn1bC89/C89 mice that coincided with convulsive seizures and myoclonic jerks. We compared seizure frequency and duration in a subset of adult Scn1bC89/C89 mice that had been exposed to hyperthermia at post-natal Day 15 versus a subset that were not hyperthermia exposed. No differences in spontaneous seizures were detected between groups. For both groups, the spontaneous seizure pattern was diurnal, occurring with higher frequency during the dark cycle. This work suggests that the SCN1B-c.265C>T variant does not result in complete loss-of-function. Scn1bC89/C89 mice more accurately model SCN1B-linked variants with incomplete loss-of-function compared with Scn1b-/- mice, which model complete loss-of-function, and thus add to our understanding of disease mechanisms as well as our ability to develop new therapeutic strategies.

Health literacy in cancer caregivers: a systematic review.

PURPOSE: Cancer caregivers play a vital role in the care and health decision-making of cancer survivors. Consequently, their health literacy levels may be particularly important, as low levels may impede adequate care provision. As such, the current review aimed to systematically examine the literature on health literacy amongst cancer caregivers. METHODS: We systematically searched the following databases using controlled vocabulary and free-text terms: PsychINFO, MEDLINE, EMBASE, CINAHL and Web of Science. Peer-reviewed empirical studies that explicitly measured and reported cancer caregiver health literacy levels were included. RESULTS: The search yielded six articles consisting of 593 cancer caregivers exploring health literacy and eHealth literacy. There was substantial variation in health literacy measurement tools used across included studies, precluding the possibility of conducting a meta-analysis. The included articles reported significant associations (limited to single studies) between caregiver health/eHealth literacy and (i) cancer survivor demographics, (ii) caregivers' communication style, (iii) caregiver Internet access and (iv) caregiver coping strategies. CONCLUSIONS: Findings highlight a need for future longitudinal research regarding cancer caregiver health literacy incorporating more standardized and population-specific measurement approaches. In particular, there is a pressing need to investigate factors associated with cancer caregiver health literacy to inform the development/delivery of future interventions. IMPLICATIONS FOR CANCER SURVIVORS: Future high-quality research which investigates the factors which contribute towards sub-optimal health literacy amongst cancer caregivers would aid in the development of appropriate and effective health literacy interventions in these groups. Such interventions would allow this important group to provide appropriate support to cancer survivors and enhance survivors' engagement in their health and wellbeing.

Evaluation of COVID-19 coagulopathy; laboratory characterization using thrombin generation and nonconventional haemostasis assays.

INTRODUCTION: Patients with COVID-19 are known to have a coagulopathy with a thrombosis risk. It is unknown whether this is due to a generalized humoral prothrombotic state or endothelial factors such as inflammation and dysfunction. The aim was to further characterize thrombin generation using a novel analyser (ST Genesia, Diagnostica Stago, Asnières, France) and a panel of haematological analytes in patients with COVID-19. METHODS: Platelet poor plasma of 34 patients with noncritical COVID-19 was compared with 75 patients with critical COVID-19 (as defined by WHO criteria) in a retrospective study by calibrated automated thrombography and ELISA. Patients were matched for baseline characteristics of age and gender. RESULTS: Critical patients had significantly increased fibrinogen, CRP, interleukin-6 and D-dimer compared to noncritical patients. Thrombin generation, in critical patients, was right shifted without significant differences in peak, velocity index or endogenous thrombin potential. Tissue plasminogen activator (tPA), tissue factor pathway inhibitor (TFPI) and vascular endothelial growth factor (VEGF) were significantly increased in the critical versus noncritical patients. Critically ill patients were on haemodiafiltration (31%; heparin used in the circuit) or often received escalated prophylactic low-molecular weight heparin. CONCLUSION: These results confirm increased fibrinogen and D-dimer in critical COVID-19-infected patients. Importantly, disease severity did not increase thrombin generation (including thrombin-antithrombin complexes and prothrombin fragment 1 + 2) when comparing both cohorts; counter-intuitively critical patients were hypocoaguable. tPA, TFPI and VEGF were increased in critical patients, which are hypothesized to reflect endothelial dysfunction and/or contribution of heparin (which may cause endothelial TFPI/tPA release).

Anuran Traits of the United States (ATraiU): a database for anuran traits-based conservation, management, and research.

The United States is home to many anuran species, each with traits that set them apart from one another. Understanding trait variation within and between anurans is key to many successful conservation, management, and research efforts. However, compiling trait data is intensive and time consuming. Trait databases can meet this need, but currently there is no detailed database that collates trait data for anurans of the contiguous United States. into a single location with transparency regarding original data sources. Furthermore, many currently available trait databases rarely report multiple data points for a given species' trait, frequently reporting a single averaged value. We present an anuran traits database for the contiguous United States that includes trait data from 411 unique references. We collated trait values for 106 native and nonnative species using a tiered search protocol. First, we digitized trait data from 33 state guide books for 12 ecological, morphological, and life history traits commonly reported in the literature. We then performed a targeted search of the primary literature to address data gaps, ultimately identifying an additional 356 peer-reviewed publications, theses, and agency reports with data fitting our criteria. Finally, we digitized trait data from 22 national and regional guidebooks. Following data compilation, we conducted an intensive data quality check procedure that included both manual and statistical analyses. For full transparency, all trait values are traceable to their original reference with additional metrics (e.g., reference count, data tier) to allow users to easily filter the full data set to fit the user's needs. Overall, we report 89% of included species with trait values for at least half of the 12 traits included, providing high coverage for interspecific analyses. With a high degree of transparency, inclusion of all original data sources, and a tiered system for cataloguing data source type, ATraiU can uniquely contribute to anuran ecology and conservation in the United States. Please cite this data paper when using the data. If using a specific trait value or values, please cite the original reference(s).