The prevalence of insomnia in multiple sclerosis: A meta-analysis.

Insomnia is a common complaint for adults with multiple sclerosis and can severely impact health-related quality of life. Point prevalence estimates of insomnia are, however, difficult to determine in this population due to the use of different measurement tools as well as the highly variable clinical presentation of multiple sclerosis. This review consolidates the current evidence base to provide a global estimate of insomnia disorders and symptoms in multiple sclerosis, with consideration of both measurement and sample issues. A comprehensive review of the PUBMED, EMBASE, PsycINFO and CINAHL databases from database inception until January 31st, 2023 identified 1649 records, of which 34 (7636 participants total) were eligible for inclusion. Findings were meta-analysed using a random-effects model. Estimates based on self-reported symptoms (52%, CI: 44%-59%) were significantly higher than those obtained by diagnostic tools (22%, CI: 16%-29%). Gender was identified as a potential moderator, with women more likely to report insomnia than men. One in two adults with multiple sclerosis endorse symptoms of poor sleep quality and daytime sleepiness, with 1 in 5 diagnosed with an insomnia disorder. Future research is needed to enhance understanding of these comorbid conditions, including the trajectory of insomnia with disease progression. PROSPERO registration number CRD42021281524.

'It wasn't the strategies on their own': Exploring caregivers' experiences of accessing services in the development of interventions for autistic people with intellectual disability.

LAY ABSTRACT: Many autistic individuals with intellectual disability experience anxiety, and for those who use few or no words, anxiety may present as behaviour that challenges, such as self-injury and avoiding anxiety-provoking situations. Families report difficulty accessing support from services for autistic individuals experiencing anxiety. Moreover, once receiving support, effective interventions for autistic people with intellectual disability are limited. We completed individual and group discussions with 16 caregivers of autistic people with intellectual disability, to (a) explore their experiences of accessing services for anxiety and/or behaviour that challenges for their child; and (b) understand what matters to caregivers when developing interventions that have been designed for them and the autistic individual with intellectual disability that they support. Caregivers reported that services, in their experience, did not deliver the support that they expected, and that they often needed to 'fight' for support. Caregivers considered services and families working together, the inclusion of peer support, and families being offered interventions that are flexible to individual circumstances to be important. These considerations are valuable for clinicians and researchers developing interventions and aiming to improve outcomes for autistic people with intellectual disability and their families.

Utilising Interview Methodology to Inform the Development of New Clinical Assessment Tools for Anxiety in Autistic Individuals Who Speak Few or no Words.

Autistic individuals with intellectual disability who speak few or no words are at high risk of anxiety but are underrepresented in research. This study aimed to describe the presentation of anxiety in this population and discuss implications for the development of assessments. Interviews were conducted with 21 parents/carers of autistic individuals and nine clinicians. Data were analysed using content analysis and interpretative phenomenological analysis. Anxiety behaviours described by parents/carers included increased vocalisation, avoidance and behaviours that challenge. Changes to routine were highlighted as triggering anxiety. Clinicians discussed the importance of identifying an individual's baseline of behaviour, knowing an individual well and ruling out other forms of distress. This study raises considerations for early identification of anxiety and for subsequent support.

Patients' perspectives about doctor-patient communication regarding transvaginal mesh implant surgery.

OBJECTIVES: Many women experience pelvic floor disorders which may require medical intervention such as transvaginal mesh implant surgeries (TVM; the abdominal or vaginal insertion of woven netting to support pelvic tissue). We examined women's perceptions of communication with their health professionals concerning TVM. DESIGN: We analysed 153 women's written submissions to an Australian Government Inquiry regarding their experiences of transvaginal mesh surgery to explore their perceptions of TVM-related doctor-patient communication. Data were analysed using deductive and inductive reflexive thematic analysis. RESULTS: Women expressed several challenges in their communication with their health professionals. Three themes regarding communication were generated: Insufficient information was abundant; Normalisation and minimisation of the procedure and risks; and, Desired communication interactions. CONCLUSIONS: According to women's accounts, doctor-patient communication was poor. Health professionals must be knowledgeable about medical procedures and their potential complications and provide their patients with adequate, accurate information to make informed choices about their health. Health professionals should also document informed consent. PRACTICE IMPLICATIONS: Health professionals should be well-informed about TVM, including best-practice treatments for pelvic floor disorders, indications for TVM, the risks, outcomes and potential complications from various forms of TVM, and ways to adequately communicate sufficient information to women.

Prevalence of anxiety symptomatology and diagnosis in syndromic intellectual disability: A systematic review and meta-analysis.

Individuals with syndromic intellectual disability are at increased risk of experiencing anxiety. Comparing prevalence estimates of anxiety will allow the identification of at-risk groups and inform causal pathways of anxiety. No known study has explored estimates of anxiety symptomatology and diagnosis, including specific anxiety profiles, across groups whilst accounting for methodological quality of studies. This systematic review and meta-analysis aimed to fill this gap. Prior to review completion, methodology and analysis plans were registered and documented in a protocol (CRD42019123561). Data from 83 papers, involving a pooled sample of 13,708 across eight syndromes were synthesised using a random effects model. Anxiety prevalence ranged from 9 % (95 % CI: 4-14) in Down syndrome to 73% in Rett syndrome (95 % CI: 70-77). Anxiety prevalence across syndromic intellectual disability was higher than for intellectual disability of mixed aetiology and general population estimates. Substantial variability between syndromes identified groups at higher risk than others. The identification of high-risk groups is crucial for early intervention, allowing us to refine models of risk and identify divergent profiles.

Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management.

LAY ABSTRACT: Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

Open source tools for management and archiving of digital microscopy data to allow integration with patient pathology and treatment information.

BACKGROUND: Virtual microscopy includes digitisation of histology slides and the use of computer technologies for complex investigation of diseases such as cancer. However, automated image analysis, or website publishing of such digital images, is hampered by their large file sizes. RESULTS: We have developed two Java based open source tools: Snapshot Creator and NDPI-Splitter. Snapshot Creator converts a portion of a large digital slide into a desired quality JPEG image. The image is linked to the patient's clinical and treatment information in a customised open source cancer data management software (Caisis) in use at the Australian Breast Cancer Tissue Bank (ABCTB) and then published on the ABCTB website (http://www.abctb.org.au) using Deep Zoom open source technology. Using the ABCTB online search engine, digital images can be searched by defining various criteria such as cancer type, or biomarkers expressed. NDPI-Splitter splits a large image file into smaller sections of TIFF images so that they can be easily analysed by image analysis software such as Metamorph or Matlab. NDPI-Splitter also has the capacity to filter out empty images. CONCLUSIONS: Snapshot Creator and NDPI-Splitter are novel open source Java tools. They convert digital slides into files of smaller size for further processing. In conjunction with other open source tools such as Deep Zoom and Caisis, this suite of tools is used for the management and archiving of digital microscopy images, enabling digitised images to be explored and zoomed online. Our online image repository also has the capacity to be used as a teaching resource. These tools also enable large files to be sectioned for image analysis. VIRTUAL SLIDES: The virtual slide(s) for this article can be found here: http://www.diagnosticpathology.diagnomx.eu/vs/5330903258483934.