Quality of Life and the Experience of Living with Early-Stage Alzheimer's Disease.

Background: There is a need to better understand the experience of patients living with Alzheimer's disease (AD) in the early stages.

Objective: The aim of the study was to evaluate the perception of quality of life in patients with early-stage AD.

Methods: A multicenter, non-interventional study was conducted including patients of 50-90 years of age with prodromal or mild AD, a Mini-Mental State Examination (MMSE) score ≥22, and a Clinical Dementia Rating-Global score (CDR-GS) of 0.

Impact of Neuromyelitis Optica Spectrum Disorder on Quality of Life from the Patients' Perspective: An Observational Cross-Sectional Study.

Introduction: Neuromyelitis optica spectrum disorder (NMOSD) is associated with a reduced health-related quality of life (HRQoL). The purpose of this study was to describe the impact of NMOSD on HRQoL from the patients' perspective and its relationship with other disease factors.

Methods: An observational, cross-sectional study was conducted at 13 neuroimmunology clinics in Spain.

Quantifying the patient´s perspective in neuromyelitis optica spectrum disorder: Psychometric properties of the SymptoMScreen questionnaire.

Background: The assessment of self-reported outcomes in neuromyelitis optica spectrum disorder (NMOSD) is limited by the lack of validated disease-specific measures. The SymptoMScreen (SyMS) is a patient-reported questionnaire for measuring symptom severity in different domains affected by multiple sclerosis (MS), but has not been thoroughly evaluated in NMOSD. The aim of this study was to assess the psychometric properties of the SyMS in a sample of patients with NMOSD.

Perception of Stigma in Patients with Neuromyelitis Optica Spectrum Disorder.

Background: Perception of stigma was associated with low self-esteem, psychological problems, and decreased health-seeking behavior among patients with different neurological disorders. The purpose of this study was to assess stigmatization and its impact in patients with neuromyelitis optica spectrum disorder (NMOSD).

Methods: A non-interventional study was conducted at thirteen neuroimmunology clinics in Spain.

Short-term data on disease activity, cognition, mood, stigma and employment outcomes in a cohort of patients with primary progressive multiple sclerosis (UPPMS study).

Background: Primary progressive multiple sclerosis (PPMS) has long been defined by progressive disability accrual in the absence of initial relapses. However, its underlying neurodegenerative process seems to be accompanied by central nervous system inflammation. A new classification defined multiple sclerosis courses according to clinical/radiological activity and progression.

Brain region volumes and their relationship with disability progression and cognitive function in primary progressive multiple sclerosis.

Background And Purpose: Evidence on regional changes resulting from neurodegenerative processes underlying primary progressive multiple sclerosis (PPMS) is still limited. We assessed brain region volumes and their relationship with disability progression and cognitive function in PPMS patients.

Methods: This was an MRI analysis of 43 patients from the prospective Understanding Primary Progressive Multiple Sclerosis (UPPMS) cohort study.

A Pilot Study to Explore Patient Satisfaction With a Virtual Rehabilitation Program in Multiple Sclerosis: The RehabVR Study Protocol.

Virtual reality (VR) has emerged as a promising treatment approach in rehabilitation for patients with multiple sclerosis (MS) due to its potential to increase patient motivation and rehabilitation adherence. One of the key features for rehabilitation adherence is patient satisfaction with the VR rehabilitation (VRR) program, and information on user satisfaction and not only effectiveness is required to systematically include VRR in routine clinical practice. Given that information on patient satisfaction with VRR is scarce, the primary objective of this study is to assess long-term patient satisfaction with a novel VRR program.

CSF chitinase 3-like-1 association with disability of primary progressive MS.

Objective: To assess the role of CSF chitinase 3-like-1 (CHI3L1), chitinase 3-like-2 (CHI3L2), and neurofilament light chain (NfL) in predicting the course of primary progressive MS (PPMS).

Methods: We analyzed CSF CHI3L1, CHI3L2, and NfL levels in 25 patients with PPMS with disease duration ≤10 years and no disease-modifying therapy for ≥6 months from the prospective Understanding Primary Progressive Multiple Sclerosis cohort study. CSF samples taken at disease diagnosis were analyzed using commercial ELISAs and following the manufacturer's instructions.

Assessing Stigma in Multiple Sclerosis: Psychometric Properties of the Eight-Item Stigma Scale for Chronic Illness (SSCI-8).

Background: The stigma associated with neurologic disorders plays a part in poor health-related quality of life. The eight-item Stigma Scale for Chronic Illness (SSCI-8) is a brief self-assessment tool for measuring perceived level of stigma. The psychometric performance of the SSCI-8 in people with multiple sclerosis (MS) was assessed.

Perception of stigma in patients with primary progressive multiple sclerosis.

Stigma associated with neurological disorders may contribute to a poor health-related quality of life. However, limited information is available in primary progressive multiple sclerosis. We investigated the presence and impact of stigma in patients with primary progressive multiple sclerosis.

Measuring burden in caregivers of people with multiple sclerosis: psychometric properties of the CSI questionnaire.

Background: Understanding caregiver strain may be crucial to determine which interventions are most needed to mitigate the negative impact of caring for people with multiple sclerosis (MS). The Caregiver Strain Index (CSI) is a brief self-assessment tool for measuring the caregivers' perceived level of burden. Limited information is available on the psychometric performance of the CSI in MS.

Spanish validation of a specific measure to assess work-related problems in people with multiple sclerosis: The Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23).

Introduction: Unemployment is a significant problem for people with multiple sclerosis (MS). The MS Work Difficulties Questionnaire (MSWDQ-23) is a self-report tool to assess work-related problems in people with MS across three domains: physical, psychological/cognitive, and external barriers. The aim of this study was to assess the psychometric properties of the Spanish version of the MSWDQ-23.

Psychometric properties of the SDM-Q-9 questionnaire for shared decision-making in multiple sclerosis: item response theory modelling and confirmatory factor analysis.

Background: Shared decision-making is a cornerstone of patient-centred care. The 9-item Shared Decision-Making Questionnaire (SDM-Q-9) is a brief self-assessment tool for measuring patients' perceived level of involvement in decision-making related to their own treatment and care. Information related to the psychometric properties of the SDM-Q-9 for multiple sclerosis (MS) patients is limited.

Decision-making in Multiple Sclerosis: The Role of Aversion to Ambiguity for Therapeutic Inertia among Neurologists (DIScUTIR MS).

Objectives: Limited information is available on physician-related factors influencing therapeutic inertia (TI) in multiple sclerosis (MS). Our aim was to evaluate whether physicians' risk preferences are associated with TI in MS care, by applying concepts from behavioral economics.

Design: In this cross-sectional study, participants answered questions regarding the management of 20 MS case scenarios, completed 3 surveys, and 4 experimental paradigms based on behavioral economics.

Conjoint analysis to understand preferences of patients with multiple sclerosis for disease-modifying therapy attributes in Spain: a cross-sectional observational study.

Objective: To assess patients' preferences for a range of disease-modifying therapy (DMT) attributes in multiple sclerosis (MS).

Design: A cross-sectional observational study.

Setting: The data reported were from 17 MS units throughout Spain.

Decision making under uncertainty, therapeutic inertia, and physicians' risk preferences in the management of multiple sclerosis (DIScUTIR MS).

Background: The management of multiple sclerosis (MS) is rapidly changing by the introduction of new and more effective disease-modifying agents. The importance of risk stratification was confirmed by results on disease progression predicted by different risk score systems. Despite these advances, we know very little about medical decisions under uncertainty in the management of MS.

Severity and outcomes according to stroke etiology in patients under 50 years of age with ischemic stroke.

Unlabelled: To analyze the association of stroke etiological subtypes with severity and outcomes at 3 and 12 months in patients ≤50 years. Observational study of patients admitted to a stroke unit (2007-2013).

Variables: demographic data, vascular risk factors, comorbidities, severity on admission (NIHSS), and good functional outcome (mRS ≤ 1) at 3 and 12 months.

Antiphospholipid antibodies correlate with stroke severity and outcome in patients with antiphospholipid syndrome.

Background: Our goal was to analyze the association of the level of antiphospholipid antibodies (aPLs) with stroke severity and outcome in patients with antiphospholipid syndrome (APS).

Methods: Observational study included consecutive patients with ischemic stroke younger than 55 years (2007-2012). We analyzed serum levels of aPLs, including anticardiolipin (aCL) antibodies, anti-β2-glycoprotein I antibodies (anti-β2GPI) and antiprothrombin antibodies (aPS/PT) within the first 48 h after admission, and again, in the case of a positive result, at least 12 weeks after the first measurement.

Can we improve the early detection of atrial fibrillation in a stroke unit? Detection rate of a monitor with integrated detection software.

Introduction: It is unknown whether monitors that include atrial fibrillation recognition software (AF-RS) increase the rate of early atrial fibrillation (AF) detection in acute stroke. We aimed to evaluate the AF detection rate of an AF-RS monitor and compare it with standard monitoring.

Methods: This was a retrospective, single-centre observational study conducted on consecutive patients with acute transient ischaemic attack or brain infarction attended in a stroke unit (SU) with six beds.

The effect of telestroke systems among neighboring hospitals: more and better? The Madrid Telestroke Project.

A telestroke system was established between a community hospital lacking an on-call neurologist and a comprehensive stroke center only 13 km away. Our goal was to analyze the impact of telestroke on the number of intravenous thrombolysis (IVT), door-to-needle times and stroke outcomes. An observational before-and-after study of patients with acute ischemic stroke (IS) who were attended in a community hospital during the 2 years before the telestroke system was implemented (pre-telestroke group) and the first 2 years after telestroke was established (telestroke group).

Intravenous thrombolysis in stroke patients under 55 years of age: is there a different effect according to etiology and severity?

The effect of intravenous thrombolysis (IVT) according to etiology and stroke severity in young patients with ischemic stroke (IS) has not been described previously. To analyze the effect of IVT in young patients with IS according to etiological subtype and stroke severity. Observational study with inclusion of IS patients under 55 years of age (2007-2012).

Triple therapy with darbepoetin alfa, idebenone, and riboflavin in Friedreich's ataxia: an open-label trial.

Minimal objective evidence exists regarding management of Friedreich's ataxia (FRDA). Antioxidant and recombinant human erythropoietin therapies have been considered potential treatments to slow progression of FRDA in a small number of studies. The primary objective of the current study was to test the efficacy, safety, and tolerability of triple therapy-darbepoetin alfa, idebenone, and riboflavin-in FRDA in a clinical pilot study.

High-density lipoprotein: a novel marker for risk of in-hospital infection in acute ischemic stroke patients?

Background: Several studies have shown that high-density lipoprotein (HDL) cholesterol provides protection against bacterial infections. Our aim was to investigate the influence of HDL cholesterol levels on the risk of developing in-hospital infectious complications after an acute ischemic stroke (IS) as well as the possible effect of prestroke statin treatment on this association.

Methods And Results: Observational study that included consecutive IS patients during a 5-year period (2006-2010).