Unveiling preferences in multiple sclerosis care: insights from an Italian discrete-choice experiment with patients and healthcare professionals.

Multiple sclerosis (MS) is a chronic, inflammatory, demyelinating, neurodegenerative disease of the central nervous system, significantly impacting patients' quality of life. Understanding patient and healthcare professional (HCP) preferences for MS treatments is crucial for optimizing therapeutic strategies and improving adherence and outcomes. This Discrete-Choice Experiment (DCE) assesses preferences for various MS treatment attributes among Italian patients and HCPs.

[Registers as central real world data source: the experience of the Italian Multiple Sclerosis and Related Disorders Register].

Registers collecting data from clinical practice (real world data) have gained increasing interest in recent years in the scientific, administrative, and regulatory fields. The value of longitudinal data collection in deepening knowledge about a specific pathology and its healthcare complexity is increasingly recognized. This article describes the development, organizational structure, and technical characteristics of the Italian Multiple Sclerosis and Related Disorders Register (RISM).

A taxonomy of cognitive phenotypes in Multiple Sclerosis: a 1-year longitudinal study.

As meaningful measure of cognitive impairment (CI), cognitive phenotypes provide an avenue for symptom management and individualized rehabilitation. Since CI is highly variable in severity and progression, monitoring cognitive phenotypes over time may be useful to identify trajectory of cognitive decline in Multiple Sclerosis (MS). Based on cognitive and mood information from patient-reported outcomes (PROs) and clinician-assessed outcomes (CAOs), four cognitive subgroups of people with MS (PwMS) were identified: phenotype 1 (44.

Job Retention by People With Disabilities: A Qualitative Study of the Perspectives of People With Multiple Sclerosis.

Background: Multiple sclerosis (MS), because of its early age at onset, greatly impacts the working lives of those affected by it in ways linked to different factors, both professional and personal. It has been observed that only a small percentage (20-40%) of workers with MS retain their jobs after the diagnosis. When identifying factors determining job retention or loss in this setting, it is essential to consider the direct perspectives of people with MS (PwMS).

Occupational Physicians' Management of Workers With Multiple Sclerosis in Italy: Results From a Survey.

Background: This study, conducted on a sample of Italian occupational physicians (OPs), aimed to gather data regarding professional activity and their needs in managing workers with multiple sclerosis.

Methods: A convenience sample of OPs recruited by e-mail invitation to the list of Italian Society of Occupational Medicine members was considered. A total of 220 OPs participated between July and October 2022.

Mobile Health App (DIGICOG-MS) for Self-Assessment of Cognitive Impairment in People With Multiple Sclerosis: Instrument Validation and Usability Study.

Background: Mobile health (mHealth) apps have proven useful for people with multiple sclerosis (MS). Thus, easy-to-use digital solutions are now strongly required to assess and monitor cognitive impairment, one of the most disturbing symptoms in MS that is experienced by almost 43% to 70% of people with MS. Therefore, we developed DIGICOG-MS (Digital assessment of Cognitive Impairment in Multiple Sclerosis), a smartphone- and tablet-based mHealth app to self-assess cognitive impairment in MS.

Big Multiple Sclerosis Data network: an international registry research network.

Background: The Big Multiple Sclerosis Data (BMSD) network ( https://bigmsdata.org ) was initiated in 2014 and includes the national multiple sclerosis (MS) registries of the Czech Republic, Denmark, France, Italy, and Sweden as well as the international MSBase registry. BMSD has addressed the ethical, legal, technical, and governance-related challenges for data sharing and so far, published three scientific papers on pooled datasets as proof of concept for its collaborative design.

Profile and burden of the family caregiver: the caring experience in multiple sclerosis. An observational study.

Background: The broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden.

Methods: 200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study.

An Internet- and Kinect-Based Multiple Sclerosis Fitness Intervention Training With Pilates Exercises: Development and Usability Study.

Background: Balance impairments are common in people with multiple sclerosis (MS), with reduced ability to maintain position and delayed responses to postural adjustments. Pilates is a popular alternative method for balance training that may reduce the rapid worsening of symptoms and the increased risk of secondary conditions (eg, depression) that are frequently associated with physical inactivity.

Objective: In this paper, we aimed to describe the design, development, and usability testing of MS Fitness Intervention Training (MS-FIT), a Kinect-based tool implementing Pilates exercises customized for MS.

Work Difficulties in People with Multiple Sclerosis.

Purpose: This study identifies potential predictors of unemployment and describes specific work difficulties and their determinants in a subgroup of employed people with multiple sclerosis (PwMS). The specific work difficulties were evaluated using a validated tool that measures the impact of respondents' symptoms and of workplace features.

Methods: A cross-sectional study was carried out in Italy during 2021-2022.

The administration of the paper and electronic versions of the Manual Ability Measure-36 (MAM-36) and Fatigue Severity Scale (FSS) is equivalent in people with multiple sclerosis.

Background: The mobile device diffusion has increasingly highlighted the opportunity to collect patient-reported outcomes (PROs) through electronic patient-reported outcomes measurements (ePROMs) during the clinical routine. Despite the ePROMs promises and advantages, the equivalence when a PRO measure is moved from the original paper-and-pencil to the electronic version is still little investigated. This study aims at evaluating equivalence between PROMs and ePROMs self-administration in people with multiple sclerosis (PwMS); in addition, preference of self-administration type was evaluated.

Motor imagery has a priming effect on motor execution in people with multiple sclerosis.

Priming is a learning process that refers to behavioral changes caused by previous exposure to a similar stimulus. Motor imagery (MI), which involves the mental rehearsal of action representations in working memory without engaging in actual execution, could be a strategy for priming the motor system. This study investigates whether MI primes action execution in Multiple Sclerosis (MS).

Standard versus innovative robotic balance assessment for people with multiple sclerosis: a correlational study.

Introduction: Balance disorders are common in people with Multiple Sclerosis (PwMS) and, together with other impairments and disabilities, often prevent PwMS from performing their daily living activities. Besides clinical scales and performance tests, robotic platforms can provide more sensitive, specific, and objective monitoring. Validated technologies have been adopted as gold standard, but innovative robotic solutions would represent an opportunity to detect balance impairment in PwMS.

Development and psychometric properties of a self-assessed knowledge questionnaire for caregivers of people with multiple sclerosis (CareKoMS): a cross-sectional study.

Objectives: Knowledge about multiple sclerosis (MS) is crucial for those who provide care and support as caregivers. However, despite the key benefits of acquiring relevant information to properly assume the caregiving role, caregivers' knowledge of MS is poorly investigated. The aim of this study was to develop and validate the Caregivers' Knowledge of Multiple Sclerosis (CareKoMS), a self-assessed questionnaire, to test MS knowledge in caregivers of people with MS.

Data monitoring roadmap. The experience of the Italian Multiple Sclerosis and Related Disorders Register.

Introduction: Over the years, disease registers have been increasingly considered a source of reliable and valuable population studies. However, the validity and reliability of data from registers may be limited by missing data, selection bias or data quality not adequately evaluated or checked. This study reports the analysis of the consistency and completeness of the data in the Italian Multiple Sclerosis and Related Disorders Register.

Sars-CoV2 infection in pregnant women with multiple sclerosis.

Background: In the general population, maternal SARS-CoV-2 infection during pregnancy is associated with worse maternal outcomes; however, only one study so far has evaluated COVID-19 clinical outcomes in pregnant and postpartum women with multiple sclerosis, showing no higher risk for poor COVID-19 outcomes in these patients.

Objective: In this multicenter study, we aimed to evaluate COVID-19 clinical outcomes in pregnant patients with multiple sclerosis.

Methods: We recruited 85 pregnant patients with multiple sclerosis who contracted COVID-19 after conception and were prospectively followed-up in Italian and Turkish Centers, in the period 2020-2022.

Antibody response elicited by the SARS-CoV-2 vaccine booster in patients with multiple sclerosis: Who gains from it?

Background And Purpose: Although two doses of COVID-19 vaccine elicited a protective humoral response in most persons with multiple sclerosis (pwMS), a significant group of them treated with immunosuppressive disease-modifying therapies (DMTs) showed less efficient responses.

Methods: This prospective multicenter observational study evaluates differences in immune response after a third vaccine dose in pwMS.

Results: Four hundred seventy-three pwMS were analyzed.

Patient-reported outcome measures in drugs for neurological conditions approved by European Medicines Agency 2017-2022.

Background: Regulatory agencies have been responsive to public demand for inclusion of the patient experience in evaluating and approving therapies. Over the years, patient-reported outcome measures (PROMs) have become increasingly prevalent in clinical trial protocols; however, their influence on regulators, payers, clinicians, and patients' decision-making is not always clear. We recently conducted a cross-sectional study aimed at investigating the use of PROMs in new regulatory approvals of drugs for neurological conditions between 2017 and 2022 in Europe.

Neural stem cell transplantation in patients with progressive multiple sclerosis: an open-label, phase 1 study.

Innovative pro-regenerative treatment strategies for progressive multiple sclerosis (PMS), combining neuroprotection and immunomodulation, represent an unmet need. Neural precursor cells (NPCs) transplanted in animal models of multiple sclerosis have shown preclinical efficacy by promoting neuroprotection and remyelination by releasing molecules sustaining trophic support and neural plasticity. Here we present the results of STEMS, a prospective, therapeutic exploratory, non-randomized, open-label, single-dose-finding phase 1 clinical trial ( NCT03269071 , EudraCT 2016-002020-86), performed at San Raffaele Hospital in Milan, Italy, evaluating the feasibility, safety and tolerability of intrathecally transplanted human fetal NPCs (hfNPCs) in 12 patients with PMS (with evidence of disease progression, Expanded Disability Status Scale ≥6.

Work Barriers and Job Adjustments of People with Multiple Sclerosis: A Systematic Review.

Purpose The aim was to carry out a systematic review dedicated to describing the work barriers and the job adjustments that are particularly sensitive to people with Multiple Sclerosis (PwMS). Methods Four electronic databases (PubMed/MEDLINE, Scopus, SciVerse ScienceDirect, and Web of Science) were searched for peer-reviewed original articles reporting the barriers at work and/or the job adjustments used by PwMS. MS must have been diagnosed according to accepted international criteria at the time of the study and/or confirmed by a doctor.

Predictors of Mood Disorders in Parents With Multiple Sclerosis: The Role of Disability Level, Coping Techniques, and Perceived Social Support.

Background: Being a parent can be demanding and stressful, especially for people with chronic diseases such as multiple sclerosis (MS). Parenting can be disrupted by flareups, disease worsening, and other MS symptoms, including mobility problems, pain, fatigue, and cognitive impairment. Mood disorders, such as depression and anxiety, have been found to occur at much higher rates in people with MS than in the general population.

Signs and symptoms of COVID-19 in patients with multiple sclerosis.

Background And Purpose: Clinical outcomes of multiple sclerosis (MS) patients affected by coronavirus disease 2019 (COVID-19) have been thoroughly investigated, but a further analysis on main signs and symptoms and their risk factors still needs attention. The objective of this study was to group together and describe based on similarity the most common signs and symptoms of COVID-19 in MS patients and identify all factors associated with their manifestation.

Method: Logistic and linear regression models were run to recognize factors associated with each pooled group of symptoms and their total number.

Prevalence of chronic comorbidities in people with multiple sclerosis: descriptive study based on administrative data in Tuscany (Central Italy).

Objective: Chronic comorbidities are common in people with multiple sclerosis (PwMS), thus worsening their prognosis and quality of life, and increasing disease burden. The aim of the present study was to evaluate the prevalence of common comorbidities in PwMS in Tuscany (Central Italy) and to compare it with the general population.

Methods: The prevalence of comorbidities, including diabetes, chronic obstructive pulmonary disease (COPD), hypertension, stroke, heart failure (HF), cardiac infarction and ischemic heart disease (IHD), was assessed in PwMS and in general population resident in Tuscany, aged > 20 years, using administrative data.

Stigma, Discrimination and Disclosure of the Diagnosis of Multiple Sclerosis in the Workplace: A Systematic Review.

The objective of the study was to describe and analyze the stigma, discrimination and the disclosure of the diagnosis of Multiple Sclerosis (MS) in the workplace. The protocol was registered in PROSPERO (CRD42022320437). We systematically searched four scientific databases with key search terms.