The Prevalence of Cognitive Impairment in Relapsing-Remitting Multiple Sclerosis: A Systematic Review and Meta-analysis.

It is increasingly recognized that cognitive symptoms are a common sequelae of relapsing-remitting multiple sclerosis and are associated with adverse functional consequences. However, estimates of cognitive impairment (CIm) prevalence vary widely. This study aimed to determine the pooled prevalence of CIm among adults with RRMS and investigate moderators of prevalence rates. Following prospective registration (PROSPERO; CRD42021281815), electronic databases (Embase, Scopus, Medline, and PsycINFO) were searched from inception until March 2023. Eligible studies reported the prevalence of CIm among adults with RRMS, as determined through standardized neuropsychological testing and defined as evidence of reduced performance across at least two cognitive domains (e.g., processing speed, attention) relative to normative samples, healthy controls, or premorbid estimates. The electronic database search yielded 8695 unique records, of which 50 met selection criteria. The pooled prevalence of cognitive impairment was 32.5% (95% confidence interval 29.3-36.0%) across 5859 participants. Mean disease duration and age were significant predictors of cognitive impairment prevalence, with samples with longer disease durations and older age reporting higher prevalence rates. Studies which administered more extensive test batteries also reported significantly higher cognitive impairment prevalence. Approximately one third of adults with RRMS experience clinical levels of CIm. This finding supports the use of routine cognitive testing to enable early detection of CIm, and to identify individuals who may benefit from additional cognitive and functional support during treatment planning.

The development and evaluation of a vaccination pathway for children with intellectual and developmental disability and needle fear.

This qualitative study describes the development and evaluation of a clinical pathway to facilitate the implementation of catch-up vaccinations for children with significant needle fear, particularly in children with developmental disabilities. The Specialist Immunization Team, based at a tertiary level teaching children's hospital, participated in process mapping activities using Motivational Interviewing (MI) techniques and reflective discussions. Team members developed a clinical pathway by incorporating parental feedback from semistructured interviews and clinical expertise from within the team, facilitated by colleagues from the Child Development Unit. A process map was developed that included process strengths and touch points with an action plan that was discussed and agreed upon. A repeat process mapping activity was conducted 16 months later. Reports from parental feedback included: positive, efficient, and successful experiences of having their child undergo catch-up vaccinations. The experience empowered families for further procedures. Team members reported improvements in triaging appropriate children for the pathway, and an increase in confidence to interact and manage behaviors of children with significant anxiety and challenging behaviors. They also reported an increase in successful vaccinations with improved clinical judgment of facilitating the sedation pathway. This study demonstrates that using group facilitation using motivational interviewing in reflective discussions and process mapping utilizing parent and staff feedback in service improvement activities results in efficient and successful service delivery with improved patient outcomes.

What do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis.

OBJECTIVES: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. DESIGN, SETTING AND PARTICIPANTS: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. RESULTS: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. CONCLUSIONS: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. PATIENT AND PUBLIC CONTRIBUTION: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.

General practitioners' perspectives regarding early developmental surveillance for autism within the australian primary healthcare setting: a qualitative study.

BACKGROUND: Significant challenges remain in the early identification of child developmental disabilities in the community. Implementing supports and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental disabilities, including autism. As part of a cluster randomised controlled trial, this study seeks to examine and compare the perspectives and experiences of Australian general practitioners (GPs) in relation to a digital developmental surveillance program for autism and usual care pathway, in general practice clinics. METHODS: A qualitative research methodology with semi-structured interviews and thematic inductive analysis underpinned by grounded theory was utilised. All GPs from South Western Sydney (NSW) and Melbourne (Victoria) who participated in the main program ("GP Surveillance for Autism") were invited to the interview. GPs who provided consent were interviewed either over online or in-person meeting. Interviews were audio-recorded, transcribed, and coded using NVivo12 software. Inductive interpretive approach was adopted and data were analysed thematically. RESULTS: Twenty-three GPs across the two sites (NSW: n = 11; Victoria: n = 12) agreed to be interviewed; data saturation had reached following this number of participants. Inductive thematic coding and analysis yielded eight major themes and highlighted common enablers such as the role of GPs in early identification and subsequent supports, enhanced communication between clinicians/professionals, relationship-building with patients, and having standardised screening tools. Specific facilitators to the feasibility and acceptability of a digital screening program for the early identification of developmental disabilities, including the early signs of autism, and encouraging research and education for GPs. However, several practical and socioeconomic barriers were identified, in addition to limited knowledge and uptake of child developmental screening tools as well as COVID-19 lockdown impacts. Common and specific recommendations involve supporting GPs in developmental/paediatrics training, streamlined screening process, and funding and resources in the primary healthcare services. CONCLUSIONS: The study highlighted the need for practice and policy changes, including further training of GPs alongside sufficient time to complete developmental checks and appropriate financial remuneration through a Medicare billing item. Further research is needed on implementation and scale up of a national surveillance program for early identification of developmental disabilities, including autism.

What do healthcare staff think about the quality and safety of care provided to children and young people with an intellectual disability? A qualitative study using the framework method of analysis.

OBJECTIVE: To elicit patient safety issues pertaining to children and young people with intellectual disability in hospital from healthcare staff perspectives. This follows a previous paper of parent interviews of patient safety experiences of their child in hospital. DESIGN: Qualitative study. SETTING: We conducted semi-structured interviews and focus groups of staff of tertiary children's hospitals based on the domains of the Patient Safety Education Framework and using the framework methodology for data analysis. PARTICIPANTS: There were 29 female and 7 male staff aged between 27 and 70 years from a range of departments and specialties including ancillary staff. INTERVENTION: Questions based on the patient safety framework were developed from consultation with parents, researchers and clinicians exploring staff views and experiences of safety and quality care of these children in hospital. During April 2021 to May 2022, 22 interviews and 3 focus groups were conducted of staff who have had experience caring for children and young people with intellectual disability in the last 12 months in the hospital. RESULTS: Key themes elicited include Definition of Safety, Need to consider additional vulnerabilities of children and young people with intellectual disability in hospital, Communication is key to safe care, Parent and family perspectives on safe care, Management challenges compromising safety and Service system gaps in preventing, identifying and managing risk. CONCLUSIONS: Staff need to consider additional vulnerabilities, mitigate negative attitudes and biases towards better engagement and relationships with parents, children and young people of this population. Improvement of current systems that prevent the identification, prevention and management of risk and safety issues for this population need to be undertaken. Future developments include combining data from parent interviews, academic and grey literature in developing safety competencies in this population for training and education of staff across the health system.

Parental experience of an early developmental surveillance programme for autism within Australian general practice: a qualitative study.

OBJECTIVES: Implementing support and services early in the life course has been shown to promote positive developmental outcomes for children at high likelihood of developmental conditions including autism. This study examined parents'/caregivers' experiences and perceptions about a digital developmental surveillance pathway for autism, the autism surveillance pathway (ASP), and usual care, the surveillance as usual (SaU) pathway, in the primary healthcare general practice setting. DESIGN: This qualitative study involves using a convenience selection process of the full sample of parents/caregivers that participated in the main programme, 'General Practice Surveillance for Autism', a cluster-randomised controlled trial study. All interviews were audio-recorded, transcribed and coded using NVivo V.12 software. An inductive thematic interpretive approach was adopted and data were analysed thematically. PARTICIPANTS: Twelve parents/caregivers of children with or without a developmental condition/autism (who participated in the main programme) in South Western Sydney and Melbourne were interviewed. SETTINGS: All interviews were completed over the phone. RESULTS: There were seven major themes and 20 subthemes that included positive experiences, such as pre-existing patient-doctor relationships and their perceptions on the importance of knowing and accessing early support/services. Barriers or challenges experienced while using the SaU pathway included long waiting periods, poor communication and lack of action plans, complexity associated with navigating the healthcare system and lack of understanding by general practitioners (GPs). Common suggestions for improvement included greater awareness/education for parents/carers and the availability of accessible resources on child development for parents/caregivers. CONCLUSION: The findings support the use of digital screening tools for developmental surveillance, including for autism, using opportunistic contacts in the general practice setting. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12619001200178).

Anxiety sensitivity moderates the subjective experience but not the physiological response to psychosocial stress.

The ability to regulate emotional reactions is a complex process that incorporates both physiological and psychological components. Anxiety sensitivity is a construct associated with the negative and often misinterpretation of bodily sensations, with previous findings suggesting that anxiety sensitivity may regulate an individual's physiological response to an acute stress response. The aim of the current study, therefore, was to identify whether anxiety sensitivity moderates the physiological and subjective experience of acute psychosocial stress. Fifty-eight undergraduate students high and low on anxiety sensitivity (as indexed by the Anxiety Sensitivity Index - Third Edition) had their physiology recorded during a widely-used psychosocial stress induction procedure; the Trier Social Stress Test (TSST). Heart rate and skin conductance, together with self-reported anger and tension on the Profile of Mood States questionnaire, significantly increased in response to the TSST. Conversely, high-frequency heart rate variability (HF-HRV) decreased in response to the TSST. We found that anxiety sensitivity moderated the subjective experience of the TSST, such that those who had greater anxiety sensitivity self-reported elevated tension in response to the TSST compared to those with low anxiety sensitivity. Anxiety sensitivity did not moderate any of the physiological outcomes of the TSST. Consequently, this study provides a physiological profile on how the autonomic nervous system responds to stress. Additionally, these findings suggest that beliefs about body sensations specifically affects the interpretation of stressful experiences rather than augmenting physiological reactions themselves. This may provide insights into how biases subserve the development and maintenance of dysregulated emotional experience.