Background And Purpose: The European Charcot Foundation supported the development of a set of surveys to understand current practice patterns for the diagnosis and management of multiple sclerosis (MS) in Europe. Part 2 of the report summarizes survey results related to secondary progressive MS (SPMS), primary progressive MS (PPMS), pregnancy, paediatric MS and overall patient management.
Methods: A steering committee of MS neurologists developed case- and practice-based questions for two sequential surveys distributed to MS neurologists throughout Europe.
Results: Respondents generally favoured changing rather than stopping disease-modifying treatment (DMT) in patients transitioning from relapsing-remitting MS to SPMS, particularly with active disease. Respondents would not initiate DMT in patients with typical PPMS symptoms, although the presence of ≥1 spinal cord or brain gadolinium-enhancing lesion might affect that decision. For patients considering pregnancy, respondents were equally divided on whether to stop treatment before or after conception. Respondents strongly favoured starting DMT in paediatric MS with active disease; recommended treatments included interferon, glatiramer acetate and, in John Cunningham virus negative patients, natalizumab. Additional results regarding practice-based questions and management are summarized.
Conclusions: Results of part 2 of the survey of diagnostic and treatment practices for MS in Europe largely mirror results for part 1, with neurologists in general agreement about the treatment and management of SPMS, PPMS, pregnancy and paediatric MS as well as the general management of MS. However, there are also many areas of disagreement, indicating the need for evidence-based recommendations and/or guidelines.
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http://dx.doi.org/10.1111/ene.13581 | DOI Listing |
Background: It is essential that both drug and lifestyle-based interventions aimed at delaying the functional decline in conditions like Alzheimer's disease and related dementias (ADRDs) capture change in functioning that incorporates the person's voice. Such brain health priorities can vary across populations and it is unclear to what degree findings from the ePSOM program in the UK might apply to the US.
Methods: We conducted an online nationwide study to understand what matters to people aged 50 and older about their brain health in the US.
Alzheimers Dement
December 2024
Department of Psychiatry and Psychotherapy, Medical Faculty, University of Cologne, Cologne, Germany.
Background: Due to further development of diagnostic methods of early-stage diagnosis of Alzheimer's disease (AD) and new disease-modifying treatment options that require early diagnosis, a new focus on predictive and preventive medicine arises. With progress in AD dementia risk estimation, guidelines for counseling, considering individual aspects of those affected, are becoming more important. As part of the trinational project PreTAD (The Predictive Turn in Alzheimer's Disease: Ethical, Clinical, Linguistic and Legal Aspects) anticipated effects of AD dementia risk estimation for first-degree relatives of people with AD dementia are evaluated.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
Universidade Federal de São Paulo (UNIFESP), São Paulo, São Paulo/SP, Brazil.
Background: Dementia awareness and education are currently limited among healthcare workers and the general public, contributing towards the generation and propagation of stigma and discrimination against people with dementia worldwide. It is crucial to promote evidence-based anti-stigma interventions with a focus on stigma reduction.
Method: This is a randomized and controlled feasibility trial of a group intervention aimed at improving knowledge and reducing stigma related to dementia among Community Health Workers (CHWs) (Trial Registration: RBR-10xp637m).
Alzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: How people affected by non-memory-led and inherited dementias (NMLDs) interact with online health resources is poorly understood. We conducted the world's largest survey exploring 'digital access in non-memory-led dementias' to learn directly from people with NMLD, their care partners and NMLD Healthcare Professionals (HCPs) about the NMLD experience interacting with web-based health resources.
Method: Four surveys [for individuals diagnosed with NMLD, care partners, care partner proxy for person with NMLD, HCP proxy] were co-developed with people with NMLD experience.
Alzheimers Dement
December 2024
Eisai Inc., Nutley, NJ, USA.
Background: The National Plan to Address Alzheimer's Disease (AD) prioritizes timely diagnosis of mild cognitive impairment (MCI) as one of its key goals. Studies describing the downstream consequences of not having a timely diagnosis in this vulnerable population are limited. The study objective will evaluate the relationship between a timely MCI diagnosis and decline in functional outcomes compared to a missed diagnosis.
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