IMID are associated with an increased incidence of PDs both before and after an IMID diagnosis. These results support the relevance of shared risk factors in the co-occurrence of PDs and IMID conditions.
Background/Objectives: Epilepsy is one of the most common and debilitating neurological conditions that affects nearly 50 million people worldwide, yet there remains a stigma around this condition, which can impact the information-seeking behaviours of patients. As the Brain and Mental Health Research Clinics develop a website about registry-based research, including patient-facing areas, it is important to understand how patients look for information, and the types of information they are seeking out. The objective of this study was to encourage conversation and understand the patient perspectives of existing knowledge gaps between epilepsy patients and the resources they use to obtain information. Methods: A total of thirteen patients (mean (SD) age = 46.4 (16.1) years) from the Calgary Comprehensive Epilepsy Program Registry and four caregivers participated in one of the three focus groups completed in order to meet our aims. There were eight female and five male patients. A semi-structured guide was used to understand the patients’ experiences, top concerns, informational resources currently used, and resources or knowledge that patients felt are lacking. The focus groups were audio-recorded and transcribed verbatim. Thematic content analysis was conducted by two researchers who independently open-coded the transcripts using NVivo 11. The final analysis was done by team discussion and ongoing analysis of the codes to create themes and sub-themes. Results: The major themes that emerged from the data included: 1) daily management; 2) resources; and 3) medications and treatment. For daily management, the participants reported concerns about the effects of epilepsy on day-to-day activities such as driving, working, and the barriers they face in society due to their perceived lack of awareness and education about seizure management in the general public. The participants felt negatively impacted by the stigma and compared their experience with epilepsy with other disorders such as cancer or diabetes which they feel are much more accepted in society. The geographical location of the patient also plays a role in the support they receive for epilepsy management, with participants citing challenges and feelings of isolation in rural areas. To acquire more information about epilepsy, participants reported that they primarily asked their physicians or searched online. However, despite the conveniences of the internet, some individuals felt the volume and variation of quality of online information was overwhelming. Instead, they would prefer to go to trusted resources that are provided by healthcare professionals or websites affiliated with hospitals or universities. Updated information on medication, side effects, and research are examples of resources the patients would like to see provided on such websites. Conclusion: Overall, it is clear from our focus groups that resources and support for self-management and day-to-day living for individuals with epilepsy is paramount to reduce knowledge gaps. Not only is it important to provide daily management and medication information to patients through trusted organizational resources, but it is equally important to increase public awareness about epilepsy and seizure disorders to reduce the stigma attached to these conditions.
Background: Neurological disability progression occurs across the spectrum of people living with multiple sclerosis (PwMS) Currently, no treatments exist that substantially modify the course of clinical progression in MS, one of the greatest unmet needs in clinical practice Characterizing the determinants of clinical progression is essential for the development of novel therapeutic agents and treatment approaches that target progression in PwMS Objectives: The overarching aim of CanProCo is to evaluate a wide spectrum of factors associated with the onset and rate of disease progression in MS, and to describe how these factors interact with one another to influence progression Methods: CanProCo is a prospective, observational cohort study aiming to recruit 1000 individuals with radiologically-isolated syndrome (RIS), relapsing-remitting MS (RRMS), and primary-progressive MS (PPMS) within 10-15 years of disease onset, and 50 healthy controls (HCs) from five large academic MS centers in Canada Participants undergo detailed clinical evaluations annually A subset of participants enrolled within 5-10 years of disease onset (n=500) also have blood, cerebrospinal fluid, and MRIs collected facilitating study of biological measures (e g single-cell RNAsequencing[ scRNASeq]), MRI-based microstructural assessment, participant characteristics (self-reported, performance-based, clinician- assessed, health-system based), and environmental factors as determinants contributing to the differential progression in MS Results: Recruitment commenced in April/May 2019 and n=536 patients have been recruited to date (RRMS=457, PPMS=35, RIS=25, HC=19) Baseline age, sex distribution, and Expanded Disability Status Scale (EDSS) scores (median, range) of each subgroup are: RRMS=38 years, 73% female, EDSS=1 5 (0-6 0);PPMS=52 years, 40% female, EDSS=4 0 (1 5-6 5);RIS=41 years, 68% female, EDSS=0 (0-3 0);HC=37 years, 63% female Recruitment has surpassed the 50% target but has been paused due to the COVID-19 pandemic scRNASeq on frozen blood samples has been validated Conclusions: Halting the progression of MS is a fundamental clinical need to improve the lives of PwMS Achieving this requires leveraging transdisciplinary approaches to better characterize mechanisms underlying clinical progression CanProCo is the first prospective cohort study aiming to characterize these determinants to inform the development and implementation of efficacious and effective interventions
The COVID-19 pandemic has necessitated public health measures that have impacted the provision of care for people living with dementia and their families. Additionally, the isolation that results from social distancing may be harming well-being for families as formal and informal supports become less accessible. For those living with dementia and experiencing agitation, social distancing may be even harder to maintain, or social distancing could potentially aggravate dementia-related neuropsychiatric symptoms. To understand the lived experience of social and physical distancing during the COVID-19 pandemic in Canada, we remotely interviewed 21 participants who normally attend a dementia specialty clinic in Calgary, Alberta, during a period where essential businesses were closed and health care had abruptly transitioned to telemedicine. A reflexive thematic analysis was used to analyze the interview and field note data. The impacts of the public health measures in response to the pandemic emerged through iterative analysis in three main categories of experience: (1) personal, (2) health services, and (3) health status (of both persons living with dementia and care partner). Isolation and mental health needs emerged as important impacts to family experiences. This in-depth understanding of the needs and experiences of the pandemic for people living with dementia suggests that innovative means are urgently needed to facilitate provision of remote medicine and also social interaction and integration.
Read moreINTRODUCTION: Patient and public involvement (PPI) in research is increasingly recognised for its potential to enhance feasibility, improve relevance and foster collaboration at different stages of a study. Reporting guidelines such as GRIPP2 (Guidance for Reporting Involvement of Patients and the Public) have been developed to help improve completeness and transparency in PPI reporting. This meta-research project aims to assess the impact of the GRIPP2 reporting guidelines through citation and alternative metrics, analysing its uptake or adoption across authors, institutions, journals and countries, as well as its practical application in reporting PPI within diverse research designs. METHODS AND ANALYSIS: This protocol for a meta-research project consists of two studies. In Study 1, we will conduct a search across Web of Science, Scopus and Google Scholar to identify all publications citing the GRIPP2 guidelines (planned for July 2026 using forward citation analysis). Retrieved records will undergo standardised processing and structured de-duplication to ensure each citing article is represented once. Following de-duplication, data from unique citations-including title, publication year, journal, subject category, keywords, document type, citations, authors' names, institutional affiliations, country and funding sources-will be collected. Citation counts, alternative metrics (eg, mentions in policy documents, news media) and knowledge production patterns across authors, institutions, journals and countries will be analysed to assess GRIPP2's impact and uptake of the guidelines. Descriptive analyses will be conducted (including the number of papers, citations, authors, countries, journals, keywords, funding, field distribution and main collaboration metrics). Network analyses will be carried out to study the structure of collaborations. In Study 2, we will evaluate a random sample of 300 research articles citing GRIPP2, including randomised trials (n=100), systematic reviews with meta-analyses (n=100) and health economic evaluations (n=100). If an insufficient number of citing studies are available within these categories, we will include additional study types identified in Study 1 (eg, study protocols, observational studies, mixed-methods or qualitative research studies and other types of reviews). Reporting and PPI practices in each article will be extracted by at least two researchers using a standardised data extraction form. Information on general, methodological and PPI items will be analysed and reported, stratified by study design (eg, randomised trials vs systematic reviews vs health economic evaluations). ETHICS AND DISSEMINATION: Due to the nature of the proposed study, no ethical approval will be required. All data will be deposited in a cross-disciplinary public repository. It is anticipated the study findings could be relevant to a variety of audiences. Study findings will be disseminated at scientific conferences and published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: Open Science Framework: https://osf.io/et85d.
Read moreAs eating disorders are often undetected, more comprehensive training and access to screening tools may help improve detection, mitigate symptom progression, and enhance patient safety.
Read moreInflammatory bowel disease with PC increases health care utilization compared with matched controls and compared with persons with IBD without PC. Active PC further increases health care utilization.
Read moreSensitivity of the case definition is often moderate, and specificity is often high, possibly due to undercoding of depression. Limitations to this study include the use of FP charts data as the reference standard, given the potential for missed or incorrect depression diagnoses. These results suggest that that administrative data can be used as a source of information for both research and surveillance purposes, while remaining aware of these limitations.
Read moreRecreational physical activity is associated with youth mental health (particularly in males), but non-recreational physical activity is not consistently associated. While the data are cross-sectional and cannot support causal inference, these results highlight the potential importance of accessible recreational physical activity programs. Further, these results may inform guidelines about types of youth physical activity and their apparent mental health benefits.
Read moreUse of BZD is more common in people with MS than in general population controls, and use of these agents is in persons with MS is often chronic.
Read moreMothers with chronic disease initiate and continue some form of breastfeeding to six months as often as their unaffected peers. However, they have substantially higher odds of ceasing exclusive breastfeeding before the recommended 6 months. Findings suggest a need to investigate the reasons for this disparity to ensure that appropriate breastfeeding support is available for women with chronic disease and their children.
Read moreGiant cell (temporal) arteritis is a severe potentially fatal systemic vasculitis characterized by focal involvement of the cranial arteries resulting in ischaemic arterial occlusion. The case is presented of a 75-year-old woman with presumed giant cell arteritis and normal bilateral temporal artery biopsies. Despite a seemingly adequate course of systemic steroid therapy, the patient developed sudden catastrophic vision loss. Cerebral angiography and ultrasonography were useful investigations to determine the most appropriate artery to biopsy to confirm the diagnosis of giant cell arteritis.
Read moreAnxiety and depression are associated with lower cognitive function in MS, with a similar pattern observed in persons with other IMID, including IBD and RA, and persons without an IMID. Managing symptoms of anxiety and of depression in MS, as well as other IMIDs, is important to mitigate their effect on cognition.
Read moreOpen science remains vital to the progress and functioning of the global research enterprise. Published in 2015, the Transparency and Openness Promotion Guidelines (TOP 2015) was developed as a policy framework to enhance the verifiability of empirical research claims in journal articles. It has been widely used and adopted by publishers and academic journals, but despite its uptake, concerns have been raised about aspects of the TOP 2015 framework and its implementation. In response to the above, the purpose of this manuscript is to introduce an official update to the TOP Guidelines. The final version—TOP 2025—provides updated guidelines for promoting the verifiability of published empirical research claims.
Read moreHealthcare spending among patients with schizophrenia continues to increase and may be partially attributable to growing rates of multimorbidity within this population. Although promising second-generation antipsychotic medications have entered the market, this has resulted in considerable changes in the distribution of healthcare spending over time. These findings will inform policy discussions around resource allocation and efforts to curb health spending while also improving care for patients with schizophrenia.
Read moreUsing the gold-standard SCID assessment, high rates of mental disorders were found in this cohort of firefighters who had experienced a devastating fire. Fewer cases would have been identified by screening questionnaire alone.
Read moreWe sought to determine the relationship between physical activity and mortality in community-dwelling stroke survivors.
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