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1.
Neurol Sci ; 45(3): 1155-1162, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37828384

RESUMO

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. METHODS: The Manual Ability Measure-36 (MAM-36) and Fatigue Severity Scale (FSS) were selected for the equivalence test. The app ABOUTCOME was developed through a user-centered design approach to administer the questionnaires on tablet. Both paper-and-pencil and electronic versions were randomly self-administered. Intrarater reliability between both versions was evaluated through the intraclass correlation coefficient (ICC, excellent for values ≥ 0.75). RESULTS: Fifty PwMS (35 females) participated to the study (mean age: 54.7±11.0 years, disease course: 27 relapsing-remitting and 23 progressive; mean EDSS: 4.7±1.9; mean disease duration: 13.3±9.5 years). No statistically significant differences were found for the means total scores of MAM-36 (p = 0.61) and FSS (p = 0.78). The ICC value for MAM-36 and FSS was excellent (0.98 and 0.94, respectively). Most of participants preferred the tablet version (84%). CONCLUSION: The results of the study provide evidence about the equivalence between the paper-and-pencil and electronic versions of PROs administration. In addition, PwMS prefer electronic methods rather than paper because the information can be provided more efficiently and accurately. The results could be easily extended to other MS PROs.


Assuntos
Esclerose Múltipla , Feminino , Humanos , Adulto , Pessoa de Meia-Idade , Idoso , Reprodutibilidade dos Testes , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/complicações , Inquéritos e Questionários , Fadiga/diagnóstico , Fadiga/etiologia , Comprimidos
2.
Neurol Sci ; 45(6): 2783-2789, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38175316

RESUMO

BACKGROUND: A comprehensive assessment of upper limb (UL) function is mandatory in people with multiple sclerosis (PwMS), and the use of multiple objective and subjective measures is advisable. Findings on the role of cognitive impairment on the assessment of UL function are scant and inconclusive. The present study investigated the influence of cognitive function on the distribution of objective and subjective UL measures and on their association. METHODS: In the cross-sectional study, subjects with a diagnosis of MS, age ≥ 18 years, right-hand dominance, no presence of orthopedic UL impairment, or other neurological diseases were recruited. The assessment protocol included the Nine-Hole Peg Test (9-HPT), Box and Block Test (BBT), and hand grip strength (HGS), a validated PROM (MAM-36), and the Symbol Digit Modalities Test (SDMT). RESULTS: Two hundred forty-six PwMS were recruited (158 females, mean age = 51.65 ± 13.45 years; mean EDSS = 5.10 ± 1.88) Subject with mild-to-moderate cognitive impairment (SDMT ≤ - 2 SD of normative values) scored lower on the 9-HPT and higher on the BBT and MAM-36 when compared with subject with no cognitive impairment. Cognitive impairment showed a small but significant effect on the association between 9-HPT scores and the MAM-36. DISCUSSION: Findings suggest that cognitive impairment is associated with subjects' performance on 9-HPT, BBT, and MAM-36 (but not HGS), resulting in scores indicating a poorer UL function. Interestingly, cognitive impairment slightly affected the congruence between subjective and objective UL measures, although only minor differences in the correlation pattern across groups reporting different cognitive performances emerged.


Assuntos
Disfunção Cognitiva , Esclerose Múltipla , Testes Neuropsicológicos , Extremidade Superior , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/fisiopatologia , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia , Estudos Transversais , Extremidade Superior/fisiopatologia , Adulto , Disfunção Cognitiva/fisiopatologia , Disfunção Cognitiva/etiologia , Disfunção Cognitiva/diagnóstico , Força da Mão/fisiologia , Cognição/fisiologia
3.
Sensors (Basel) ; 24(11)2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38894116

RESUMO

BACKGROUND: Robotic devices are known to provide pivotal parameters to assess motor functions in Multiple Sclerosis (MS) as dynamic balance. However, there is still a lack of validation studies comparing innovative technologies with standard solutions. Thus, this study's aim was to compare the postural assessment of fifty people with MS (PwMS) during dynamic tasks performed with the gold standard EquiTest® and the robotic platform hunova®, using Center of Pressure (COP)-related parameters and global balance indexes. METHODS: Pearson's ρ correlations were run for each COP-related measure and the global balance index was computed from EquiTest® and hunova® in both open (EO) and closed-eyes (EC) conditions. RESULTS: Considering COP-related parameters, all correlations were significant in both EO (0.337 ≤ ρ ≤ 0.653) and EC (0.344 ≤ ρ ≤ 0.668). Furthermore, Pearson's analysis of global balance indexes revealed relatively strong for visual and vestibular, and strong for somatosensory system associations (ρ = 0.573; ρ = 0.494; ρ = 0.710, respectively). CONCLUSIONS: Findings confirm the use of hunova® as a valid device for dynamic balance assessment in MS, suggesting that such a robotic platform could allow for a more sensitive assessment of balance over time, and thus a better evaluation of the effectiveness of personalized treatment, thereby improving evidence-based clinical practice.


Assuntos
Esclerose Múltipla , Equilíbrio Postural , Robótica , Humanos , Esclerose Múltipla/fisiopatologia , Equilíbrio Postural/fisiologia , Masculino , Robótica/instrumentação , Robótica/métodos , Feminino , Adulto , Pessoa de Meia-Idade , Tecnologia Assistiva
4.
Eur J Neurol ; 30(1): 172-178, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36086993

RESUMO

BACKGROUND AND PURPOSE: Upper limb (UL) function is often affected in people with multiple sclerosis (PwMS) and is typically assessed through objective measures, including the Nine Hole Peg Test (9-HPT), Box and Block Test (BBT), and Hand Grip Strength (HGS). It is important to include the subjective perspective of PwMS in the assessment. This study aims to evaluate associations between Manual Ability Measure-36 (MAM-36) and 9-HPT, BBT, and HGS in MS. METHODS: The cross-sectional study included five Italian centers. Inclusion criteria were age ≥ 18 years, MS diagnosis, and stable disease course. Exclusion criteria were bilateral UL paralysis, and concomitant orthopedic or neurological diseases. RESULTS: A total of 199 PwMS were included: 128 female, mean age = 50.7 ± 13.0 years, 119 relapsing-remitting MS (RRMS), 31 primary and 49 secondary progressive MS, mean disease duration = 14.0 ± 10.4, years, mean Expanded Disability Status Scale (EDSS) = 4.6 ± 2.0. The MAM-36 showed small correlations with 9-HPT, BBT, and HGS. Correlations between MAM-36 and 9-HPT and BBT were highest among subjects with EDSS ≥ 6 and progressive MS. MAM-36 and HGS showed the highest correlations in subjects with EDSS ≤ 5 and RRMS. Combining 9-HPT and HGS provided the strongest predictive power over the MAM-36. CONCLUSIONS: Correlations between objective measures and MAM-36 were small to moderate, meaning that objective measures do not match subjects' perception of UL function. The combination of 9-HPT and HGS measures can help improve the assessment of UL function in activities of daily living.


Assuntos
Esclerose Múltipla , Adolescente , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Atividades Cotidianas , Estudos Transversais , Avaliação da Deficiência , Força da Mão , Esclerose Múltipla/diagnóstico , Medidas de Resultados Relatados pelo Paciente , Extremidade Superior
5.
J Neurol Phys Ther ; 47(2): 112-121, 2023 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-36753458

RESUMO

BACKGROUND AND PURPOSE: Regular physical activity (PA) helps to reduce the severity of physical and mental symptoms and improves quality of life in people with multiple sclerosis (PwMS). Based on current evidence and expert opinion, the recent multiple sclerosis guidelines recommend at least 150 minutes/week of PA. This study presents the results of a survey analyzing whether and how PwMS met the guidelines before and during the pandemic. METHODS: We developed and disseminated an international online survey between December 2020 and July 2021, investigating changes in self-reported PA type, duration, frequency, and intensity due to the COVID-19 outbreak in PwMS with differing disability levels. RESULTS: Among respondents (n = 3810), 3725 were eligible. The proportion of those who conducted at least one activity decreased with increasing disability level at both time points (pre and during). Overall 60% of respondents met the guidelines before the pandemic (mild: 64.43%; moderate: 51.53%; severe: 39.34%; χ 2(2) = 109.13, P < 0.01); a reduction of approximately 10% occurred during the pandemic in all disability groups (mild: 54.76%; moderate: 42.47%; severe: 29.48%; χ 2(2) = 109.67, P < 0.01). Respondents with higher disability participated more in physical therapy and less in walking, cycling, and running at both time points. Most respondents reported practicing PA at a moderate intensity at both time points; frequency and duration of sessions decreased as disability level increased. DISCUSSION AND CONCLUSIONS: The percentage of those meeting the guidelines reduced with increasing disability level and during the pandemic. PA type and intensity varied widely across the disability categories. Interventions accounting for disability level are required to enable more PwMS to reap the benefits of PA.Video Abstract available for more insights from the authors (see the Video, Supplemental Digital Content 1, http://links.lww.com/JNPT/A415 ).


Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Pandemias , Qualidade de Vida , COVID-19/prevenção & controle , Exercício Físico
6.
Neurol Sci ; 44(3): 999-1008, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36441342

RESUMO

BACKGROUND: Comorbid conditions are common in people with multiple sclerosis (pwMS). They can delay diagnosis and negatively impact the disease course, progression of disability, therapeutic management, and adherence to treatment. OBJECTIVE: To quantify the economic impact of comorbidity in multiple sclerosis (MS), based on cost-of-illness estimates made using a bottom-up approach. METHODS: A retrospective study was carried out in two northern Italian areas. The socio-demographic and clinical information, including comorbidities data, were collected through ad hoc anonymous self-assessment questionnaire while disease costs (direct and indirect costs of disease and loss of productivity) were estimated using a bottom-up approach. Costs were compared between pwMS with and without comorbidity. Adjusted incremental costs associated with comorbidity were reported using generalized linear models with log-link and gamma distributions or two-part models. RESULTS: 51.0% of pwMS had at least one comorbid condition. Hypertension (21.0%), depression (15.7%), and anxiety (11.7%) were the most prevalent. PwMS with comorbidity were more likely to use healthcare resources, such as hospitalizations (OR = 1.21, p < 0.001), tests (OR = 1.59, p < 0.001), and symptomatic drugs and supplements (OR = 1.89, p = 0.012), and to incur non-healthcare costs related to investment (OR = 1.32, p < 0.001), transportation (OR = 1.33, p < 0.001), services (OR = 1.33, p < 0.001), and informal care (OR = 1.43, p = 0.16). Finally, they experienced greater productivity losses (OR = 1.34, p < 0.001) than pwMS without comorbidity. The adjusted incremental annual cost per patient due to comorbidity was €3,106.9 (13% of the overall costs) with MS disability found to exponentially affect annual costs. CONCLUSION: Comorbidity has health, social, and economic consequences for pwMS.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/terapia , Qualidade de Vida , Estudos Retrospectivos , Comorbidade , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde
7.
Sensors (Basel) ; 23(22)2023 Nov 17.
Artigo em Inglês | MEDLINE | ID: mdl-38005634

RESUMO

Limited longitudinal studies have been conducted on gait impairment progression overtime in non-disabled people with multiple sclerosis (PwMS). Therefore, a deeper understanding of gait changes with the progression of the disease is essential. The objective of the present study was to describe changes in gait quality in PwMS with a disease duration ≤ 5 years, and to verify whether a change in gait quality is associated with a change in disability and perception of gait deterioration. We conducted a multicenter prospective cohort study. Fifty-six subjects were assessed at baseline (age: 38.2 ± 10.7 years, Expanded Disability Status Scale (EDSS): 1.5 ± 0.7 points) and after 2 years, participants performed the six-minute walk test (6MWT) wearing inertial sensors. Quality of gait (regularity, symmetry, and instability), disability (EDSS), and walking perception (multiple sclerosis walking scale-12, MSWS-12) were collected. We found no differences on EDSS, 6MWT, and MSWS-12 between baseline and follow-up. A statistically significant correlation between increased EDSS scores and increased gait instability was found in the antero-posterior (AP) direction (r = 0.34, p = 0.01). Seventeen subjects (30%) deteriorated (increase of at least 0.5 point at EDSS) over 2 years. A multivariate analysis on deteriorated PwMS showed that changes in gait instability medio-lateral (ML) and stride regularity, and changes in ML gait symmetry were significantly associated with changes in EDSS (F = 7.80 (3,13), p = 0.003, R2 = 0.56). Moreover, gait changes were associated with a decrease in PwMS perception on stability (p < 0.05). Instrumented assessment can detect subtle changes in gait stability, regularity, and symmetry not revealed during EDSS neurological assessment. Moreover, instrumented changes in gait quality impact on subjects' perception of gait during activities of daily living.


Assuntos
Transtornos Neurológicos da Marcha , Esclerose Múltipla , Humanos , Adulto , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Estudos Longitudinais , Atividades Cotidianas , Estudos Prospectivos , Avaliação da Deficiência , Marcha , Caminhada
8.
Mult Scler ; 28(7): 1009-1019, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-33045916

RESUMO

Cognitive rehabilitation in multiple sclerosis (MS) aims at reducing patients' cognitive impairments, improving their awareness and ability to take cognitive difficulties into account in their daily living. However, at this moment, more high-quality randomized trials are needed to draw conclusion about the effectiveness of cognitive interventions in MS. Although existing studies provide clear descriptions of intervention key ingredients (e.g. targeted cognitive domain as well as treatment frequency and duration) and the practical details needed to manage these key elements (e.g. restorative approaches, compensatory strategies, or environmental modifications), other crucial aspects received less attention in rehabilitation research. The aim of this topical review is to try to elucidate some critical issues that were only partly addressed and analyzed by the scientific literature: setting (center-based vs home-based) and mode (individual vs group) of the cognitive rehabilitation treatment.


Assuntos
Disfunção Cognitiva , Esclerose Múltipla , Terapia Ocupacional , Atividades Cotidianas , Cognição , Disfunção Cognitiva/etiologia , Humanos , Esclerose Múltipla/complicações , Esclerose Múltipla/psicologia
9.
Arch Phys Med Rehabil ; 103(10): 2009-2015, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35760106

RESUMO

OBJECTIVE: To investigate the impact of the COVID-19 pandemic on physical activity in persons with multiple sclerosis (PwMS). DESIGN: Multicenter international online survey study. SETTING: The survey was conducted within 11 participating countries. Each country launched the survey using online platforms from May to July 2021. PARTICIPANTS: This was an electronic survey study targeting PwMS (N=3725). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: The survey ascertained physical activity performance and its intensity, the nature of the activities conducted, and the use of technology to support home-based physical activity before and during the pandemic. RESULTS: A total of 3725 respondents completed the survey. Prepandemic, the majority (83%) of respondents reported being physically active, and this decreased to 75% during the pandemic. This change was significant for moderate- and high-intensity activity (P<.0001). Activities carried out in physiotherapy centers, gyms, or pools decreased the most. Walking was the most frequently performed activity prepandemic (27%) and increased during the pandemic (33%). A total of 24% of those inactive during the pandemic had no intention of changing their physical activity behavior post pandemic. A total of 58% of the respondents did not use technology to support physical activity during the pandemic. Of those who did use technology, wearables were most used (24%). Of those currently nonactive (25%) expressed a preference for an in-person format to conduct physical activity post pandemic. CONCLUSIONS: Physical activity performance, especially activities at moderate and high intensities, decreased during the pandemic in PwMS compared with prepandemic. Walking and using wearables gained popularity as ways to stay active. As we move toward an endemic COVID-19, a call for action to develop interventions focused on walking programs with specific emphasis on increasing physical activity of PwMS is proposed.


Assuntos
COVID-19 , Esclerose Múltipla , Exercício Físico , Humanos , Pandemias , Inquéritos e Questionários , Tecnologia
10.
Sensors (Basel) ; 22(23)2022 Dec 06.
Artigo em Inglês | MEDLINE | ID: mdl-36502265

RESUMO

The balance of people with multiple sclerosis (PwMS) is commonly assessed during neurological examinations through clinical Romberg and tandem gait tests that are often not sensitive enough to unravel subtle deficits in early-stage PwMS. Inertial sensors (IMUs) could overcome this drawback. Nevertheless, IMUs are not yet fully integrated into clinical practice due to issues including the difficulty to understand/interpret the big number of parameters provided and the lack of cut-off values to identify possible abnormalities. In an attempt to overcome these limitations, an instrumented modified Romberg test (ImRomberg: standing on foam with eyes closed while wearing an IMU on the trunk) was administered to 81 early-stage PwMS and 38 healthy subjects (HS). To facilitate clinical interpretation, 21 IMU-based parameters were computed and reduced through principal component analysis into two components, sway complexity and sway intensity, descriptive of independent aspects of balance, presenting a clear clinical meaning and significant correlations with at least one clinical scale. Compared to HS, early-stage PwMS showed a 228% reduction in sway complexity and a 63% increase in sway intensity, indicating, respectively, a less automatic (more conscious) balance control and larger and faster trunk movements during upright posture. Cut-off values were derived to identify the presence of balance abnormalities and if these abnormalities are clinically meaningful. By applying these thresholds and integrating the ImRomberg test with the clinical tandem gait test, balance impairments were identified in 58% of PwMS versus the 17% detected by traditional Romberg and tandem gait tests. The higher sensitivity of the proposed approach would allow for the direct identification of early-stage PwMS who could benefit from preventive rehabilitation interventions aimed at slowing MS-related functional decline during neurological examinations and with minimal modifications to the tests commonly performed.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/diagnóstico , Equilíbrio Postural , Marcha , Movimento
11.
Mult Scler ; 27(12): 1924-1938, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33565906

RESUMO

BACKGROUND: Cognitive-motor interference (CMI) has been well recognized in persons with multiple sclerosis (pwMS); however, there are limited data on effects of task difficulty. OBJECTIVE: Examine (1) the effects of motor and cognitive tasks varying in difficulty on the magnitude of CMI and (2) the discriminative validity of CMI between pwMS and healthy controls (HC). METHODS: Nine cognitive-motor dual-task (DT) conditions (combinations of three cognitive and three walking tasks) were examined. Outcome measures were DT-performance and dual-task cost (DTC) of gait parameters and correct answers. Task differences and overall group-effects were analysed by mixed model analysis, plus the Wilcoxon signed-rank tests or multivariate analysis of variances (MANOVAs), respectively. RESULTS: Task effects were examined in 82 pwMS (Expanded Disability Status Scale (EDSS): 3.3 ± 1.0) and discriminative validity in a subsample (35 pwMS and 33 HC). Motor-DTC and DT-performance were affected by difficulty of both the cognitive task (p < 0.001) and the walking condition (p ⩽ 0.002), while cognitive-DTC only varied between cognitive tasks with a large difference in difficulty (p ⩽ 0.005) and not between walking conditions (p ⩾ 0.125). None of the DTCs differed between groups. CONCLUSION: CMI, and especially motor performance, is affected by difficulty of the DT. Although pwMS performed worse on the tasks than HC, none of the DT-conditions showed a discriminative DTC.


Assuntos
Esclerose Múltipla , Cognição , Marcha , Humanos , Análise e Desempenho de Tarefas , Caminhada
12.
Mult Scler ; 27(1): 90-96, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-31845614

RESUMO

BACKGROUND: The Arm function in Multiple Sclerosis Questionnaire (AMSQ) has been developed as a self-reported measure of arm and hand functioning for patients with multiple sclerosis (MS). The AMSQ was originally developed in Dutch and to date translated into five languages (i.e. English, German, Spanish, French, and Italian). OBJECTIVE: The aim of this study was to evaluate differential item functioning (DIF) of the AMSQ in these languages. METHODS: We performed DIF analyses, using "language" as the polytomous group variable. To detect DIF, logistic regression and item response theory principles were applied. Multiple logistic regression models were evaluated. We used a pseudo R2 value of 0.02 or more as the DIF threshold. RESULTS: A total of 1733 male and female patients with all subtypes of MS were included. The DIF analysis for the whole dataset showed no uniform or non-uniform DIF on any of the 31 items. All R2 values were below 0.02. CONCLUSION: The AMSQ is validated in six languages. All items have the same meaning to MS patients in Dutch, English, German, Spanish, French, and Italian. This validation study enables use of the AMSQ in international studies, for monitoring treatment response and disease progression.


Assuntos
Idioma , Esclerose Múltipla , Braço , Feminino , Humanos , Masculino , Psicometria , Inquéritos e Questionários
13.
Eur J Neurol ; 28(7): 2259-2268, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33864413

RESUMO

BACKGROUND AND PURPOSE: People with multiple sclerosis (PwMS) often report walking limitations even when the gold standard Expanded Disability Status Scale (EDSS) indicates normal walking endurance/autonomy. The present multicenter study on early-stage PwMS aims at analyzing which aspects are associated with patient-reported walking limitations measured with the 12-item Multiple Sclerosis Walking Scale (MSWS-12). METHODS: Eighty-two PwMS (EDSS ≤ 2.5) were assessed using the Fullerton Advanced Balance Scale-short (FAB-s), the Fatigue Severity Scale (FSS) and the 6-min Walk Test (6MWT), the latter administered also to 21 healthy subjects. Participants performed the 6MWT wearing three inertial sensors on ankles and trunk. Instrumented metrics describing gait velocity (stride length and frequency) and quality (regularity, symmetry, instability) were computed from sensor data. Fatigue (FSS), balance (FAB-s), walking endurance (6MWT) and instrumented metrics were entered in a multiple regression model with MSWS-12 as dependent variable. RESULTS: Gait symmetry, gait instability, fatigue and balance were significantly associated with self-rated walking ability, whilst walking endurance and velocity were not. Fatigue, balance, gait symmetry and instability were more impaired in participants reporting mild-to-moderate (MSMM-PWL , 25 ≤ MSWS-12 < 75) compared to those reporting none-to-minimal (MSnm-PWL , 0 ≤ MSWS-12 ≤ 25) perceived walking limitations. Compared to healthy subjects, gait symmetry and stability were reduced in MSnm-PWL and MSMM-PWL , even in those participants with EDSS ≤ 1.5. CONCLUSION: Instrumentally assessed gait quality aspects (symmetry and instability) are associated with patient-reported walking ability in early-stage PwMS and seem sensitive biomarkers to detect subtle impairments even in the earliest stages of the disease (EDSS ≤ 1.5). Future studies should assess their ability to follow walking change due to MS progression or pharmacological/rehabilitation interventions.


Assuntos
Esclerose Múltipla , Caminhada , Marcha , Humanos , Esclerose Múltipla/complicações , Medidas de Resultados Relatados pelo Paciente , Teste de Caminhada
14.
Neurol Sci ; 41(11): 3273-3281, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32394274

RESUMO

INTRODUCTION: Arm and hand function deficits are commonly in people with multiple sclerosis (PwMS). The Arm Function in Multiple Sclerosis Questionnaire (AMSQ) is a novel self-administered instrument specifically developed to evaluate upper limb function in MS. The aim of this study was to translate and adapt the AMSQ into Italian and to assess its psychometric properties in PwMS. Validity (structural, construct, and known-groups) and reliability (internal consistency, test-retest, and measurement error) were assessed. MATERIALS AND METHODS: From June 2017 to February 2018, a prospective cohort of PwMS among those followed as outpatients at the Rehabilitation Services of the Italian Multiple Sclerosis Society (AISM) of Genoa, Padua, and Vicenza was involved in the study. Construct validity of AMSQ was determined by examining correlations with the Italian version of ABILHAND, Modified Fatigue Impact Scale (MFIS), and Functional Independence Measure (FIM). RESULTS: A total of 234 PwMS were enrolled. The mean AMSQ total score was 67.3 (SD = 38.4). Factor analysis results suggested one factor. As expected, moderate to high correlation coefficients were found between AMSQ and ABILHAND (- 0.79), MFIS (0.50) and its subsets, and FIM (- 0.60) and its subsets involving upper limb functioning. PwMS with higher EDSS reported worse total score of AMSQ than patients with low disability. The internal consistency of the 31 items was high (Cronbach's α, 0.98). Test-retest reliability, as measured with ICC, was 0.96 (95% IC, 0.93-0.98), and measurement error was about 8.3 points showing good reliability. DISCUSSION: AMSQ has been adapted and validated, it is a reliable questionnaire for Italian PwMS.


Assuntos
Esclerose Múltipla , Braço , Avaliação da Deficiência , Humanos , Itália , Esclerose Múltipla/diagnóstico , Estudos Prospectivos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
15.
Neurol Sci ; 41(6): 1539-1546, 2020 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-31974795

RESUMO

BACKGROUND: Multiple sclerosis (MS) is a chronic autoimmune disease of the central nervous system with an unpredictable course. During its course, deficits affecting upper limb functions may occur. Hence, there is a need for self-administered scales providing a comprehensive assessment of upper limb functions. The Manual Ability Measure-36 (MAM-36), which investigates patients' performance in activities of daily living requiring upper limb function, has not been adapted and validated in the Italian context. OBJECTIVES: We develop an Italian translation and validation of the MAM-36 in a population of people with MS (PwMS), explore its psychometric properties and investigate its associations with clinical data and the Nine Hole Peg Test (9-HPT). RESEARCH PLAN AND METHODS: The multicentre study involved five Italian neurological centres. Subjects were evaluated using EDSS, 9-HPT and the MAM-36 scale. We used confirmatory factor analysis and Rasch analysis to investigate the properties of the MAM-36. RESULTS: We enrolled 218 PwMS. Results supported the unidimensionality of the MAM-36, and adequate functioning of rating scale and items. Additionally, the MAM-36 showed weak negative associations with age and disease duration, and moderate associations with EDSS and 9-HPT scores. DISCUSSION: The adapted MAM-36 showed adequate psychometric properties. However, indications of problematic targeting to PwMS with low disability emerged. For this reason, use of the scale appears to be more suitable among patients with moderate-to-severe disability.


Assuntos
Destreza Motora/fisiologia , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/fisiopatologia , Psicometria/normas , Extremidade Superior/fisiopatologia , Atividades Cotidianas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Psicometria/instrumentação , Reprodutibilidade dos Testes , Índice de Gravidade de Doença , Tradução , Adulto Jovem
16.
Neurol Sci ; 41(2): 459-462, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31659583

RESUMO

Machine learning (ML) applied to patient-reported (PROs) and clinical-assessed outcomes (CAOs) could favour a more predictive and personalized medicine. Our aim was to confirm the important role of applying ML to PROs and CAOs of people with relapsing-remitting (RR) and secondary progressive (SP) form of multiple sclerosis (MS), to promptly identifying information useful to predict disease progression. For our analysis, a dataset of 3398 evaluations from 810 persons with MS (PwMS) was adopted. Three steps were provided: course classification; extraction of the most relevant predictors at the next time point; prediction if the patient will experience the transition from RR to SP at the next time point. The Current Course Assignment (CCA) step correctly assigned the current MS course with an accuracy of about 86.0%. The MS course at the next time point can be predicted using the predictors selected in CCA. PROs/CAOs Evolution Prediction (PEP) followed by Future Course Assignment (FCA) was able to foresee the course at the next time point with an accuracy of 82.6%. Our results suggest that PROs and CAOs could help the clinician decision-making in their practice.


Assuntos
Progressão da Doença , Aprendizado de Máquina , Esclerose Múltipla/terapia , Avaliação de Resultados em Cuidados de Saúde/métodos , Índice de Gravidade de Doença , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Medidas de Resultados Relatados pelo Paciente , Prognóstico , Estudo de Prova de Conceito
17.
Mult Scler ; 25(10): 1402-1411, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31502913

RESUMO

Wearable sensors are designed to be worn on the body or embedded into portable devices (e.g. smartphones and smartwatches), allowing continuous patient-based monitoring, objective outcomes measuring, and feedback delivering on daily-life activities. Within the medicine domain, there has been a rapid increase in the development, testing, and use of wearable technologies especially in the context of neurological diseases. Although wearables represent promising tools also in multiple sclerosis (MS), the research on their application in MS is still ongoing, and further studies are required to assess their reliability and accuracy to monitor body functions and disability in people with MS (pwMS). Here, we provided a comprehensive overview of the opportunities, potential challenges, and limitations of the wearable technology use in MS. In particular, we classified previous findings within this field into macro-categories, considered crucial for disease management: assessment, monitoring, intervention, advice, and education. Given the increasing pivotal role played by wearables, current literature suggests that for pwMS, the time is right to shift from a center-based traditional therapeutic paradigm toward a personalized patient-based disease self-management. On this way, we present two ongoing initiatives aimed at implementing a continuous monitoring of pwMS and, consequently, providing timely and appropriate care interventions.


Assuntos
Acelerometria , Monitorização Ambulatorial , Esclerose Múltipla/reabilitação , Reabilitação Neurológica , Educação de Pacientes como Assunto , Autogestão , Telemedicina , Dispositivos Eletrônicos Vestíveis , Humanos , Esclerose Múltipla/diagnóstico
18.
Neurol Sci ; 40(3): 617-620, 2019 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-30291467

RESUMO

INTRODUCTION: Several multiple sclerosis studies matching self- and physician assessment of disease course and disability show moderate and high agreement respectively. However, the role played by socio-demographic, clinical, and quality of life (QoL) factors was not much investigated. The study aims at exploring how self-/physician agreement could depend on these variables. MATERIALS AND METHODS: Participants were asked to report own disease course and disability according to preset categories. Kappa-value and confidence interval (CI) for disease course and two-way random interclass correlation coefficient (ICC) and CI for disability were calculated to evaluate self-/physician agreement. Χ2 was applied to examine whether other factors (gender, age, education, civil status, disease duration, fatigue, quality of life) had systematic effects. RESULTS: Data analysis on 203 participants indicated fair agreement (Kappa-value = 0.30; 95% CI 0.23-0.38) and no dependency on the categories of each variable for disease course. Satisfactory correlation was found for disability (ICC = 0.74; 95% IC 0.67-0.80), good agreement was found for almost all variable categories, and significant differences were observed for education (better agreement for higher levels), disease duration, fatigue and QoL (better agreement for worse conditions). DISCUSSION: Results seem to suggest that higher education and worse clinical and QoL conditions could engage the patient in developing more disease awareness and realistic self-perception and self-evaluation.


Assuntos
Esclerose Múltipla/diagnóstico , Esclerose Múltipla/psicologia , Qualidade de Vida/psicologia , Autoavaliação (Psicologia) , Adulto , Avaliação da Deficiência , Escolaridade , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estatísticas não Paramétricas
19.
Neurol Sci ; 40(6): 1137-1144, 2019 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-30810827

RESUMO

BACKGROUND: Assessing the coverage by public or private resources in meeting health-related and social-related needs may be useful for service planning and guide optimization of care, important especially in view of an increase in the prevalence of multiple sclerosis (MS). METHODS: An ad hoc questionnaire assessed satisfaction of health-related and social care-related needs in a cross-sectional study of 1014 people with MS identified through MS outpatient clinics and local branches and social media channels of the Italian MS Society. RESULTS: 87.1% and 79.8% of the responders had experienced at least one health-related or social-related need, respectively. The study demonstrated significant gaps between perceived needs and service provision. Rehabilitation, residential care, and psychological support were most frequently unsatisfied health-related needs, while the more commonly unmet social-related needs were financial support, elimination of architectural barriers, workplace adaptations, and career guidance. The multivariate analysis highlighted that the satisfaction of health-related needs was primarily associated with geographic area of residence. Social-related needs correlated with both clinical and sociodemographic aspects. CONCLUSION: The results provide insight into the range of interventions, care, and support people with MS report to be important to them at different points in their disease trajectory. More emphasis should be put on the inequitable distribution of NHS services in different geographic areas of Italy as well as on particularly fragile subgroups of the MS population (older individuals, and those with higher levels of disability) because the care of these individuals continues to be assumed by the family.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Disparidades em Assistência à Saúde/estatística & dados numéricos , Esclerose Múltipla/epidemiologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Itália/epidemiologia , Masculino , Pessoa de Meia-Idade , Esclerose Múltipla/psicologia , Avaliação das Necessidades , Satisfação do Paciente , Inquéritos e Questionários , Adulto Jovem
20.
Neurol Sci ; 38(12): 2131-2138, 2017 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-28914385

RESUMO

To date, a lack of accurate information about how the different rehabilitation settings are actually delivered to people with multiple sclerosis (PwMS) is still present. Here, we described how PwMS use the different rehabilitation settings in Italy. An observational retrospective study was designed and data collected through an anonymous questionnaire distributed attending MS clinical centers, rehabilitation units, or among PwMS affiliated to the Italian MS Society. We considered as settings: out-patient ambulatory therapy (OUT), hospitalized therapy (HOSP, in-patient and out-patient hospitalized therapy), and home-based therapy (HOME). One thousand six hundred eighty-six subjects at all disability levels were included in the analysis. A high number (53%, n = 890) did not receive rehabilitation care in the last 3 months before the interview. Main causes were probably due to organizational aspects and poor transports and road networks especially in Center and the Islands. The rehabilitation setting profile of the 796 subjects obtaining rehabilitation care consisted in 58.3% (n = 464) receiving only OUT setting, 9.4% (n = 75) only HOSP setting, and 21.7% (n = 173) only HOME setting. We observed a percentage of overlap among different rehabilitation settings: 3.9% (n = 31) OUT-HOME, 3.6% (n = 29) OUT-HOSP, 2.6% (n = 21) HOSP-HOME, and 0.4% (n = 3) OUT-HOME-HOSP. The physiotherapy was the treatment more common among different rehabilitation settings. Only in the in-patient hospitalized therapy setting, the patient received more frequently diversified treatment. Considering the results, the admission to rehabilitation care in Italy is still far from the standards outlined by the recent guidelines that hypothesize a multidisciplinary evaluation and a more individualized rehabilitation plan.


Assuntos
Esclerose Múltipla/reabilitação , Centros de Reabilitação , Assistência Ambulatorial/estatística & dados numéricos , Avaliação da Deficiência , Feminino , Serviços de Assistência Domiciliar/estatística & dados numéricos , Hospitalização , Humanos , Itália , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Centros de Reabilitação/estatística & dados numéricos , Estudos Retrospectivos , População Rural , Inquéritos e Questionários
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