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1.
Front Psychol ; 15: 1342166, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38596329

RESUMEN

Introduction: Multiple sclerosis (MS) is generally diagnosed at an early age, making the acceptance of this chronic disease challenging. Research dedicated to young adults with MS (YawMS) is still limited. A biopsychosocial co-created intervention for YawMS integrating social, physical and psychological activities was developed (ESPRIMO intervention) in order to improve the quality of life (QoL) and well-being. This pre-post intervention assessment study examines the feasibility of the ESPRIMO intervention and its signal of efficacy. Methods: Inclusion criteria were: age 18-45 years, MS diagnosis, Expanded Disability Status Scale score < 3.5. After giving informed consent, YawMS completed a battery of questionnaires, which was repeated after the intervention. The battery included a bespoke feasibility scale, the COOP/WONCA charts, and the Short Form-12 Health Survey (SF-12). Results: Fifty-three YAwMS were enrolled and 43 (81.1%) completed the intervention. The majority of the sample positively rated the pleasantness, usefulness and feasibility of the intervention. A significant change in the COOP/WONCA "general QoL" chart (t = 3.65; p < 0.01) and SF-12 mental wellbeing component (t = -3.17; p < 0.01) was found. Discussion: ESPRIMO is an innovative intervention that is feasible; preliminary results show an improvement in QoL and mental wellbeing. Further studies are needed to test its efficacy and evaluate future implementation in health services.Clinical trial registration: ClinicalTrials.gov, NCT04431323.

2.
J Neurol ; 271(5): 2182-2194, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38366072

RESUMEN

OBJECTIVE: Multiple sclerosis (MS) is a complex disorder in which environmental and genetic factors interact modifying disease risk and course. This multicentre, case-control study involving 18 Italian MS Centres investigated MS course by ethnicity and native-country economic status in foreign-born patients living in Italy. METHODS: We identified 457 MS patients who migrated to Italy and 893 age- and sex-matched native-born Italian patients. In our population, 1225 (93.2%) subjects were White Europeans and White Northern Americans (WENA) and 89 (6.8%) patients were from other ethnical groups (OEG); 1109 (82.1%) patients were born in a high-income (HI) Country and 241 (17.9%) in a low-middle-income (LMI) Country. Medical records and patients interviews were used to collect demographic and disease data. RESULTS: We included 1350 individuals (973 women and 377 men); mean (SD) age was 45.0 (11.7) years. At onset, 25.45% OEG patients vs 12.47% WENA (p = 0.039) had > 3 STIR spine lesions. At recruitment, the same group featured mean (SD) EDSS score of 2.85 (2.23) vs 2.64 (2.28) (p = 0.044) reached in 8.9 (9.0) vs 12.0 (9.0) years (p = 0.018) and underwent 1.10 (4.44) vs. 0.99 (0.40) annual MRI examinations (p = 0.035). At disease onset, patients from LMI countries had higher EDSS score than HI patients (2.40 (1.43) vs 1.99 (1.17); p = 0.032). DISCUSSION: Our results suggested that both ethnicity and socio-economic status of native country shape MS presentation and course and should be considered for an appropriate management of patients. To the best of our knowledge, this is the first study reporting on the impact of ethnicity in MS at an individual level and beyond an ecological population-perspective.


Asunto(s)
Esclerosis Múltiple , Humanos , Masculino , Femenino , Italia/etnología , Persona de Mediana Edad , Adulto , Esclerosis Múltiple/etnología , Estudios de Casos y Controles , Renta , Etnicidad
3.
J Neurol ; 271(1): 24-31, 2024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-37922069

RESUMEN

BACKGROUND: COVID-19 vaccines have been recommended to people with multiple sclerosis (pwMS) and, to ensure durable immunity, a third booster dose has been administered in several countries. Data about potential risks associated with the third booster dose in pwMS, such as vaccine-triggered disease exacerbations, are still scarce. OBJECTIVE: To investigate whether the administration of a third booster dose of mRNA COVID-19 vaccines was associated with an increased risk of short-term disease reactivation in a large cohort of pwMS. METHODS: We retrospectively selected 1265 pwMS who received a third booster dose of an mRNA COVID-19 vaccine. Demographic and clinical data were collected, including the presence, number and characteristics of relapses in the 60 days prior to and after the third booster dose. RESULTS: In the selected cohort, the relapse rate in the two months after administration of the third booster dose of mRNA COVID-19 vaccines did not increase when compared with the prior two months. Indeed, the percentage of pwMS experiencing relapses in the 60 days following the administration of the third booster dose was 2.1%, similar to the percentage recorded in 60 days prior to vaccination, which was 1.9%. CONCLUSIONS: The third booster dose of mRNA COVID-19 vaccines appeared to be safe for pwMS.


Asunto(s)
Vacunas contra la COVID-19 , COVID-19 , Esclerosis Múltiple , Humanos , Anticuerpos Antivirales , Enfermedad Crónica , COVID-19/prevención & control , Vacunas contra la COVID-19/efectos adversos , Esclerosis Múltiple/complicaciones , Recurrencia , Estudios Retrospectivos , Vacunación/efectos adversos , Inmunización Secundaria/efectos adversos , Vacunas de ARNm/efectos adversos
5.
Mult Scler Relat Disord ; 77: 104870, 2023 Sep.
Artículo en Inglés | MEDLINE | ID: mdl-37454568

RESUMEN

BACKGROUND: Covid-19 pandemic impacted on management of people with Multiple Sclerosis (pwMS). Level of satisfaction of pwMS regarding the care received by the staff of Multiple Sclerosis Centers (MSCs) during the pandemic was not fully investigated. In a large patient-centered multicenter study, the therapeutic adherence and quality of care of MSCs was assessed. METHODS: In April-May 2021, an online survey was widespread by 16 Italian MSCs. Frequencies, percentages and/or means and standard deviations were calculated to describe the sample. ANOVAs were performed to evaluate the effect of sociodemographic and clinical variables on overall pwMS' rating of MSC assistance. RESULTS: 1670 pwMS completed the survey (67.3% women). During the pandemic, 88% did not change their disease modifying therapy schedule, and 89.1% reached their MSCs with no or little difficulties. Even if only 1.3% of participants underwent a tele-health follow-up visit with their MSC staff, the 80.1% believed that tele-health services should be improved regardless of pandemic. 92% of participants were satisfied of how their MSC took charge of their needs; ANOVAs revealed an effect of disease duration on pwMS' level of satisfaction on MSCs management during the pandemic. CONCLUSIONS: The results revealed an efficient MSCs response to Covid-19 pandemic and provided the basis for the implementing of tele-health services that would further improve the taking charge of patients, particularly those with longer disease, higher disability, and/or living far from their MSC.


Asunto(s)
COVID-19 , Esclerosis Múltiple , Humanos , Femenino , Masculino , Esclerosis Múltiple/epidemiología , Esclerosis Múltiple/terapia , Pandemias , Proteínas del Tejido Nervioso , Atención Dirigida al Paciente , Calidad de la Atención de Salud
6.
Mult Scler ; 29(7): 856-865, 2023 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-37165941

RESUMEN

BACKGROUND: Little is known about COVID-19 course and outcomes after a third booster dose of mRNA vaccine against SARS-CoV-2 (mRNA-Vax) in patients with multiple sclerosis (pwMS) treated with ocrelizumab (OCR) and fingolimod (FNG), which showed a weakened immune response to mRNA-vax. OBJECTIVES: The aim of this study was to evaluate COVID-19 course and outcomes in pwMS on OCR and FNG after receiving the third dose of mRNA-Vax and to compare it with pwMS on natalizumab (NTZ). METHODS: Inclusion criteria: >18 years of age, being treated with OCR/FNG/NTZ since the first mRNA-Vax dose; COVID-19 after a third booster dose of mRNA-Vax; no steroids use. RESULTS: Overall, 290 pwMS (79 NTZ, 126 OCR, and 85 FNG) from 17 Italian MS centers were included. Age, Expanded Disability Status Scale (EDSS) score, MS phenotype, disease, and treatment duration were significantly different across groups. PwMS who had COVID-19 on OCR and FNG compared with those on NTZ were slightly more symptomatic with higher hospitalization rates (11.1% vs 7.1% vs 1.3%, respectively). Regression models showed that the majority of the differences observed were not related to the disease-modifying treatments (DMTs) used. No fatal cases were observed. CONCLUSION: Our results support the effectiveness of the third booster dose of mRNA-Vax against severe forms of COVID-19 in pwMS treated with OCR and FNG.


Asunto(s)
COVID-19 , Esclerosis Múltiple , Humanos , Esclerosis Múltiple/tratamiento farmacológico , COVID-19/prevención & control , Vacunas contra la COVID-19 , SARS-CoV-2 , Natalizumab/uso terapéutico , Clorhidrato de Fingolimod , ARN Mensajero , Vacunas de ARNm
7.
BMC Neurol ; 23(1): 128, 2023 Mar 29.
Artículo en Inglés | MEDLINE | ID: mdl-36991352

RESUMEN

BACKGROUND: Nabiximols (Sativex®) is a cannabinoid approved for multiple sclerosis (MS)-related spasticity. Its mechanism of action is partially understood, and efficacy is variable. OBJECTIVE: To conduct an exploratory analysis of brain networks connectivity changes on resting state (RS) functional MRI (fMRI) of MS patients treated with nabiximols. METHODS: We identified a group of MS patients treated with Sativex® at Verona University Hospital, who underwent RS brain fMRI in the 4 weeks before (T0) and 4-8 weeks after (T1) treatment start. Sativex® response was defined as ≥ 20% spasticity Numerical Rating Scale score reduction at T1 vs. T0. Connectivity changes on fMRI were compared between T0 and T1 in the whole group and according to response status. ROI-to-ROI and seed-to-voxel connectivity were evaluated. RESULTS: Twelve MS patients (7 males) were eligible for the study. Seven patients (58.3%) resulted Sativex® responders at T1. On fMRI analysis, Sativex® exposure was associated with global brain connectivity increase (particularly in responders), decreased connectivity of motor areas, and bidirectional connectivity changes of the left cerebellum with a number of cortical areas. CONCLUSIONS: Nabiximols administration is associated with brain connectivity increase of MS patients with spasticity. Modulation of sensorimotor cortical areas and cerebellum connectivity could play a role in nabiximols effect.


Asunto(s)
Cannabidiol , Cannabinoides , Esclerosis Múltiple , Masculino , Humanos , Esclerosis Múltiple/diagnóstico por imagen , Esclerosis Múltiple/tratamiento farmacológico , Cannabidiol/uso terapéutico , Dronabinol/uso terapéutico , Combinación de Medicamentos , Espasticidad Muscular/diagnóstico por imagen , Espasticidad Muscular/tratamiento farmacológico
8.
Neurology ; 100(11): e1095-e1108, 2023 03 14.
Artículo en Inglés | MEDLINE | ID: mdl-36526426

RESUMEN

BACKGROUND AND OBJECTIVES: Although the diagnosis of myelin oligodendrocyte glycoprotein antibody-associated disease (MOGAD) is based on serum MOG antibodies (MOG-Abs) positivity, patients with coexisting or restricted MOG-Abs in the CSF have been reported. The aim of this study is to characterize the relevance of CSF MOG-Abs positivity in clinical practice. METHODS: Eleven medical centers retrospectively collected clinical and laboratory data of adult and pediatric patients with suspected inflammatory CNS disease and MOG-Abs positivity in serum and/or CSF using live cell-based assays. Comparisons were performed using parametric or nonparametric tests, as appropriate. Potential factors of unfavorable outcomes were explored by Cox proportional hazard models and logistic regression. RESULTS: The cohort included 255 patients: 139 (55%) women and 132 (52%) children (i.e., <18-year-old). Among them, 145 patients (56.8%) had MOG-Abs in both serum and CSF (MOG-Abs seropositive and CSF positive), 79 (31%) only in serum (MOG-Abs seropositive and CSF negative), and 31 (12%) only in CSF (MOG-Abs seronegative and CSF positive). MOG-Abs seronegative and CSF positive predominated in adults (22% vs 3% of children), presented more commonly with motor (n = 14, 45%) and sensory symptoms (n = 13, 42%), and all but 4 (2 multiple sclerosis, 1 polyradiculoneuritis, and 1 Susac syndrome) had a final diagnosis compatible with MOGAD. When comparing seropositive patients according to MOG-Abs CSF status, MOG-Abs seropositive and CSF positive patients had a higher Expanded Disability Status Scale (EDSS) at nadir during the index event (median 4.5, interquartile range [IQR] 3.0-7.5 vs 3.0, IQR 2.0-6.8, p = 0.007) and presented more commonly with sensory (45.5% vs 24%, p = 0.002), motor (33.6% vs 19%, p = 0.021), and sphincter symptoms (26.9% vs 7.8%, p = 0.001) than MOG-Abs seropositive and CSF negative. At the last follow-up, MOG-Abs seropositive and CSF positive cases had more often persistent sphincter dysfunction (17.3% vs 4.3%, p = 0.008). Compared with seropositive patients, those MOG-Abs seronegative and CSF positive had higher disability at the last follow-up (p ≤ 0.001), and MOG-Abs seronegative and CSF positive status were independently associated with an EDSS ≥3.0. DISCUSSION: Paired serum and CSF MOG-Abs positivity are common in MOGAD and are associated with a more severe clinical presentation. CSF-only MOG-Abs positivity can occur in patients with a phenotype suggestive of MOGAD and is associated with a worse outcome. Taken together, these data suggest a clinical interest in assessing CSF MOG-Abs in patients with a phenotype suggestive of MOGAD, regardless of the MOG-Abs serostatus.


Asunto(s)
Acuaporina 4 , Esclerosis Múltiple , Femenino , Masculino , Humanos , Glicoproteína Mielina-Oligodendrócito , Estudios Retrospectivos , Autoanticuerpos
9.
Front Psychol ; 13: 1042234, 2022.
Artículo en Inglés | MEDLINE | ID: mdl-36405126

RESUMEN

Background: Co-creation allows to develop tailored interventions in chronicity and to increase patients' engagement. Considering the interacting nature of physical, psychological, and social domains in multiple sclerosis (MS), a biopsychosocial approach to care is crucial. Aims: This paper aims to present (i) an example of a co-creation process in the context of chronic diseases (ii) preferences and perspectives of young adults with multiple sclerosis (YawMS; aged 18-45) and healthcare professionals (HCPs) on the relevance, objectives, and modalities of a biopsychosocial intervention (named ESPRIMO) and on strategies/barriers to participation. Methods: A participatory mixed-method approach in three consecutive steps was implemented: online surveys with YawMS (n = 121) and HCPs (n = 43), online focus groups (FGs) with YawMS, consultation with an advisory board (AB) composed by YawMS, HCPs and researchers. For the survey, descriptive statistics and inductive content analysis have been used for quantitative and qualitative analysis, respectively. FGs and AB were used to deepen the understanding of the survey's results. Results: An integrated intervention is extremely relevant according to the perspectives of the main stakeholders. Helping disease acceptance, providing stress management strategies, and supporting emotional expression emerged as the most relevant psychological objectives according to participants. Having tangible benefits, being tailored, and fostering interpersonal relationships emerged as the main preferred characteristics of physical activity. Preferences emerged on the modalities and timing of the intervention, with a venue unrelated to the disease strongly supported. Both HCPs and YawMS highlighted as the most valuable advantages of conducting the intervention online the increased accessibility, while the main limit was the restriction to social interaction (recognized as already limited during the COVID-19 pandemic). Accessibility and lack of time resulted as the main barriers to participation. Conclusion: The co-creation process gave valuable information on preferences and perspectives of main stakeholders on objectives, modalities, and strategies to improve participation which has been used in the design of the ESPRIMO biopsychosocial intervention. Those results might inform future intervention development in the field of chronicity. The current paper outlined a co-creation methodology which might be replicated in future research on other conditions of vulnerability.

10.
Mult Scler Relat Disord ; 63: 103884, 2022 Jul.
Artículo en Inglés | MEDLINE | ID: mdl-35700669

RESUMEN

BACKGROUND: Myelin oligodendrocyte glycoprotein (MOG) antibody-associated disease (MOGAD) is a demyelinating disorder of the central nervous system whose epidemiological features are still unclear. We report current prevalence and incidence rates of MOGAD in the population of Verona province, Italy, and the seasonal distribution of disease onset. METHODS: MOGAD patients residing in Verona province were included through the consultation of a database from our Neuropathology Laboratory. Provincial prevalence was determined on 2021/1/1 (resident population: 922,291 people) and incidence rates between 2016/1/1 and 2021/1/1 were calculated from all cases, divided by the total number of person-years at risk. We also examined the distribution of attacks by month and season. RESULTS: We included 23 prevalent MOGAD cases (13 females), with a median age at onset of 36 years (range 5-69). Prevalence rate was 2.5/100,000 (95% CI 1.7-3.7). 22 incident cases were collected, with an incidence rate of 4.8/million person-years (95% CI 3.1-7.2). Among the 23 prevalent patients, disease onset was more frequent in December (4 cases), February, May, and September (3 cases/month), with a global autumn-winter predominance (September-February) of 15 cases (65%), irrespective of the clinical manifestation. CONCLUSIONS: This is the first study on an Italian population to report MOGAD prevalence and incidence rates; they are higher than the estimates for aquaporin-4-seropositive neuromyelitis optica spectrum disorder in the Caucasian population, but far lower than Multiple Sclerosis. An autumn-winter predominance of disease onset is suggested, and it could be related to environmental factors that should be ascertained, although validation in larger cohorts is mandatory.


Asunto(s)
Autoanticuerpos , Neuromielitis Óptica , Acuaporina 4 , Femenino , Humanos , Incidencia , Glicoproteína Mielina-Oligodendrócito , Neuromielitis Óptica/epidemiología , Prevalencia , Estaciones del Año
12.
Drugs Today (Barc) ; 58(1): 9-21, 2022 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-35107090

RESUMEN

In recent years, B cells have been extensively studied as a therapeutic target in multiple sclerosis (MS). Particularly, anti-CD20 monoclonal antibodies (MAbs) such as rituximab or ocrelizumab have proven to be effective in treating various forms of MS. Ofatumumab, a second-generation anti-CD20 IgG1κ fully human MAb, binds to a different, membrane-proximal epitope of CD20 compared with other anti-CD20 MAbs, thus ensuring a slower dissociation rate. This results in dose-dependent B-cell depletion mainly exerted through a mechanism of complement-dependent cytotoxicity. The repletion kinetic is faster than that of rituximab or ocrelizumab. Ofatumumab is the first approved drug for relapsing forms of MS that is administered via subcutaneous injection every 4 weeks. Two phase II and two phase III clinical trials have shown that it is effective in reducing the annualized relapse rate and clinical disability worsening, as well as in suppressing magnetic resonance imaging (MRI) disease activity. The safety profile of the drug has proven to be favorable, with good tolerability and low immunogenic risk. Moreover, the subcutaneous injection grants an easier way of administration. The current evidence on ofatumumab efficacy and safety is reviewed in the present article.


Asunto(s)
Esclerosis Múltiple , Anticuerpos Monoclonales/efectos adversos , Anticuerpos Monoclonales Humanizados , Antígenos CD20 , Humanos , Esclerosis Múltiple/tratamiento farmacológico , Recurrencia
13.
J Neurol ; 269(6): 3301-3307, 2022 Jun.
Artículo en Inglés | MEDLINE | ID: mdl-35165767

RESUMEN

BACKGROUND: Patients with multiple sclerosis (MS) often receive disease-modifying therapies (DMTs) that can expose them to reactivation of potential occult hepatitis B virus (HBV) infection (pOBI). We aimed to evaluate the MS Centers behavior regarding HBV screening and prophylaxis in a large cohort of MS patients receiving anti-CD20 or cladribine. METHODS: Retrospective, multicentric study recruiting Italian MS patients treated with rituximab, ocrelizumab and cladribine. RESULTS: We included 931 MS patients from 15 centers. All but 38 patients performed a complete HBV screening. Patients' age > 50 years was significantly associated with no history of vaccination and HBsAb titres < 100 mIU at baseline (p < 0.001). No significant correlation was found between post-vaccination HBsAb titres and type of treatment (p = 0.5), pre-or post-therapy vaccination (p = 0.2) and number of previous DMTs (p = 0.2). Among pOBI patients (n = 53), 21 received antiviral prophylaxis, while only 13 had HBV DNA monitoring and 19 patients neither monitored HBV DNA nor received prophylaxis. CONCLUSIONS: Baseline HBV screening in patients receiving anti-CD20 and cladribine is a consolidated practice. Nonetheless, HBV vaccination coverage is still lacking in such population and age is a significant factor associated with low HBV protection. Rituximab, ocrelizumab and cladribine did not impair HBV vaccine response. Almost 35% of pOBI patients fail to receive HBVr prevention. Management of HBV prophylaxis could be improved in MS patients and further prospective studies are needed to assess the effectiveness of prophylactic strategies in such patients.


Asunto(s)
Hepatitis B , Esclerosis Múltiple , Antivirales , Cladribina/uso terapéutico , ADN Viral , Hepatitis B/tratamiento farmacológico , Hepatitis B/prevención & control , Virus de la Hepatitis B/fisiología , Humanos , Persona de Mediana Edad , Esclerosis Múltiple/inducido químicamente , Esclerosis Múltiple/complicaciones , Esclerosis Múltiple/tratamiento farmacológico , Estudios Retrospectivos , Rituximab/uso terapéutico , Activación Viral
14.
Mult Scler Relat Disord ; 58: 103424, 2022 Feb.
Artículo en Inglés | MEDLINE | ID: mdl-35216793

RESUMEN

Post-vaccination disease relapses have been reported in patients with MOGAD and AQP4-IgG+NMOSD. In this retrospective multicenter Italian study we assessed the frequency of relapses after SARS-CoV-2 vaccination. We included 56 cases: MOGAD, 30; AQP4-IgG+NMOSD, 26. Vaccines received were BNT162b2-Pfizer-BioNTech in 42 patients and mRNA-1273-Moderna in 14 patients. Six patients had a history of SARS-CoV-2 infection; two of them experienced a post-infection disease relapse (MOGAD). The frequency of relapses within one month of SARS-CoV-2 vaccination was 4% (1/26) in the AQP4-IgG+NMOSD group and 0% in the MOGAD group. In these patients the potential benefits of vaccination overcome the risk of relapses.


Asunto(s)
COVID-19 , Neuromielitis Óptica , Acuaporina 4 , Autoanticuerpos , Vacuna BNT162 , COVID-19/prevención & control , Vacunas contra la COVID-19 , Humanos , Inmunoglobulina G , Glicoproteína Mielina-Oligodendrócito , Recurrencia , Estudios Retrospectivos , SARS-CoV-2 , Vacunación
16.
J Genet Genomics ; 48(6): 497-507, 2021 06 20.
Artículo en Inglés | MEDLINE | ID: mdl-34353742

RESUMEN

Among multiple sclerosis (MS) susceptibility genes, the strongest non-human leukocyte antigen (HLA) signal in the Italian population maps to the TNFSF14 gene encoding LIGHT, a glycoprotein involved in dendritic cell (DC) maturation. Through fine-mapping in a large Italian dataset (4,198 patients with MS and 3,903 controls), we show that the TNFSF14 intronic SNP rs1077667 is the primarily MS-associated variant in the region. Expression quantitative trait locus (eQTL) analysis indicates that the MS risk allele is significantly associated with reduced TNFSF14 messenger RNA levels in blood cells, which is consistent with the allelic imbalance in RNA-Seq reads (P < 0.0001). The MS risk allele is associated with reduced levels of TNFSF14 gene expression (P < 0.01) in blood cells from 84 Italian patients with MS and 80 healthy controls (HCs). Interestingly, patients with MS are lower expressors of TNFSF14 compared to HC (P < 0.007). Individuals homozygous for the MS risk allele display an increased percentage of LIGHT-positive peripheral blood myeloid DCs (CD11c+, P = 0.035) in 37 HCs, as well as in in vitro monocyte-derived DCs from 22 HCs (P = 0.04). Our findings suggest that the intronic variant rs1077667 alters the expression of TNFSF14 in immune cells, which may play a role in MS pathogenesis.


Asunto(s)
Predisposición Genética a la Enfermedad/genética , Esclerosis Múltiple/genética , Miembro 14 de la Superfamilia de Ligandos de Factores de Necrosis Tumoral/genética , Alelos , Femenino , Expresión Génica , Estudios de Asociación Genética , Genotipo , Humanos , Intrones/genética , Italia , Masculino , Polimorfismo de Nucleótido Simple , Sitios de Carácter Cuantitativo
17.
BMJ Open ; 11(8): e052012, 2021 08 13.
Artículo en Inglés | MEDLINE | ID: mdl-34389580

RESUMEN

INTRODUCTION: Multiple sclerosis (MS) is the most common cause of progressive neurological disability in young adults. The use of advance care planning (ACP) for people with progressive MS (pwPMS) remains limited. The ConCure-SM project aims to assess the effectiveness of a structured ACP intervention for pwPMS. The intervention consists of a training programme on ACP for healthcare professionals caring for pwPMS, and a booklet to be used during the ACP conversation. Herein, we describe the first two project phases. METHODS: In phase 1 we translated and adapted, to the Italian legislation and MS context, the ACP booklet of the National ACP Programme for New Zealand. Acceptability, comprehensibility and usefulness of the booklet were assessed via 13 personal cognitive interviews with pwPMS and significant others (SOs), and one health professional focus group. Based on these findings, we will revise the booklet. In phase 2 we will conduct a single-arm pilot/feasibility trial with nested qualitative study. Participants will be 40 pwPMS, their SOs, health professionals from six MS and rehabilitation centres in Italy. In the 6 months following the ACP conversation, we will assess completion of an advance care plan document (primary outcome), as well as safety of the intervention. Secondary outcomes will be a range of measures to capture the full process of ACP; patient-carer congruence in treatment preferences; quality of patient-clinician communication and caregiver burden. A qualitative process evaluation will help understand the factors likely to influence future implementation and scalability of the intervention. ETHICS AND DISSEMINATION: The project is coleaded by a neurologist and a bioethicist. Phase 1 has received ethical approvals from each participating centre, while phase 2 will be submitted to the centres in May 2021. Findings from both phases will be disseminated widely through peer-reviewed publications, conferences and workshops. TRIAL REGISTRATION NUMBER: ISRCTN48527663; Pre-results.


Asunto(s)
Planificación Anticipada de Atención , Esclerosis Múltiple , Comunicación , Estudios de Factibilidad , Humanos , Estudios Multicéntricos como Asunto , Esclerosis Múltiple/terapia , Prioridad del Paciente , Adulto Joven
18.
Artículo en Inglés | MEDLINE | ID: mdl-33919974

RESUMEN

The COVID-19 outbreak has impacted the wellbeing of people worldwide, potentially increasing maladaptive psychological responses of vulnerable populations. Although young adults with multiple sclerosis (yawMS) might be at greater risk of developing psychological distress linked to the pandemic, they might also be able to adapt to stress and find meaning in adverse life events. The aim of the present study was to explore benefit finding in response to the pandemic in a sample of yawMS. As part of a larger project, data were collected using a cross-sectional, web-based survey. Benefit finding was analysed using a qualitative thematic approach; descriptive and inferential statistics were performed to describe the sample and compare sub-groups. Out of 247 respondents with mostly relapsing-remitting MS, 199 (31.9 ± 6.97 years) reported at least one benefit. Qualitative analysis showed that during the pandemic yawMS found benefits related to three themes: personal growth, relational growth, and existential growth. No differences in benefit finding were found between age sub-groups (18-30 vs. 31-45). Participants reported a wide range of benefits, some of which seem to be specific to MS or the pandemic. Results have been transformed into tips to be introduced in clinical practice to promote resilience in yawMS through meaning making.


Asunto(s)
COVID-19 , Esclerosis Múltiple , Estudios Transversales , Humanos , Pandemias , SARS-CoV-2 , Viento , Adulto Joven
19.
Front Psychol ; 12: 598726, 2021.
Artículo en Inglés | MEDLINE | ID: mdl-33708157

RESUMEN

BACKGROUND: Multiple sclerosis (MS), the most common neurological disease that causes disability in youth, does not only affect physical functions but is also associated with cognitive impairment, fatigue, depression, and anxiety and can significantly impact health-related quality of life (HRQoL). Since MS is generally diagnosed at a young age-a period of great significance for personal, relational, and professional development-adaptation can become highly challenging. Therefore, enhancing the competence of young people to adaptively cope with these potential challenges is of utmost importance in order to promote their potentialities and talents. It has been shown that psychological interventions targeting MS patients can enhance resilience and HRQoL and that regular physical activity (PA) and social engagement can improve psychological well-being. However, literature on the development of global interventions based on the bio-psycho-social model of the disease is missing. Even less attention has been paid to interventions dedicated to young adults with MS (YawMS) and to the involvement of patients in the development of such programs. AIMS: In collaboration with MS patients, this study aims to develop a bio-psycho-social intervention (ESPRIMO) for YawMS, aiming to improve their HRQoL and to explore its feasibility, acceptability, and effects. METHODS: To tailor the intervention to the specific needs of YawMS, "patient engagement principles" will be adopted in the co-creation phase, performing a web survey and focus groups with patients and healthcare professionals. In the intervention phase, a pilot sample of 60 young adults with MS will be enrolled. The co-created intervention, composed of group sessions over a 12-week period, will cover psycho-social strategies and include physical activities. Adopting a longitudinal, pre-post evaluation design, self-report questionnaires measuring HRQoL and other bio-psycho-social features (e.g., resilience, well-being, mindfulness traits, self-efficacy, perceived social support, psychological symptoms, illness perception, committed action, fatigue, attitudes, subjective norms, perceived behavioral control, motivation, perception of autonomy support for PA, barriers and intentions to PA) will be administered, the quantity and quality of PA will be measured, and a questionnaire developed by the authors will be used to evaluate the feasibility and acceptability of the ESPRIMO intervention.

20.
Mult Scler Relat Disord ; 50: 102833, 2021 May.
Artículo en Inglés | MEDLINE | ID: mdl-33601213

RESUMEN

The unpredictable course and uncertain impact of relapses make treatment strategies of anti-myelin oligodendrocyte glycoprotein antibodies associated disorders (MOGAD) challenging. We analysed neurofilament light chain levels (NfL) in onset and follow-up sera of 18 patients with MOGAD to clarify the timing of axonal damage. In comparison with disease onset values (median 8.9 pg/mL, range 1.8-97), NfL levels remained stable or decreased in most follow-up measurements (n=52, median 6.7 pg/mL, range 0.2-207), including those measured on relapses. The predominant axonal damage occurs during onset, which could be the main driving factor of final disability, with subsequent relevant clinical and therapeutic implications.


Asunto(s)
Autoanticuerpos , Humanos , Glicoproteína Mielina-Oligodendrócito
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