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 , ComprimidosRESUMO
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/fisiologiaRESUMO
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). METHODS: A qualitative study, based on the conduction of two focus groups, was conducted to explore the personal experiences of PwMS who work. RESULTS: The results show that there are numerous factors, both positive and negative, that can influence these people's ability to retain their jobs. The climate established in the workplace and the relationship between workers with MS and their colleagues were fundamentally important aspects, as was knowledge of the disease at the level of public opinion. CONCLUSIONS: Managing work is a complex undertaking for people with a disabling condition like MS. There needs to be greater awareness of the employment rights of PwMS. Improving these knowledge-based aspects could undoubtedly improve the quality of the working lives of PwM.
Assuntos
Pessoas com Deficiência , Emprego , Grupos Focais , Esclerose Múltipla , Pesquisa Qualitativa , Humanos , Esclerose Múltipla/psicologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Pessoas com Deficiência/psicologia , Local de Trabalho/psicologia , Segurança do EmpregoRESUMO
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 SuperiorRESUMO
INTRODUCTION: Coronavirus disease (COVID-19) was associated with cognitive alterations affecting everyday life activities. These need input integration of both motor and cognitive systems. The study aim is to evaluate cognitive-motor interference phenomenon in previously independent patients with mild-to-moderate COVID-19 (PwMCOVID-19) compared with healthy controls (HC), through dual-task (DT) paradigm. METHODS: PwMCOVID-19 were included if being independent at home, had no previous referred cognitive impairment, mechanical ventilation or oxygen need. They were assessed at admission and after 6 months with a motor-cognitive DT test (counting backward by twos while walking 2 min). HC were enrolled as control group. Differences between single-task (ST) and DT performance, DT effect (DTE) and task prioritization amongst groups and during time points were analyzed. RESULTS: One-hundred PwMCOVID-19 [mean age=67.32(12.08) years; 53 M/47 F] and 39 HC [mean age=63.11(9.90) years; 20 M/19 F] were recruited. Upon T0, PwMCOVID-19 showed lower cognitive and motor DT performances than ST and HC. Mutual interference pattern was predominant in PwMCOVID-19. At T1, 41 PwMCOVID-19 were examined [mean age=64.85(10.75); 22 M/19 F]. They had a worse DT performance compared to ST, although DT improved at T1. A stronger cognitive ST-DT difference was present at T0, compared to ST-DT difference at T1, while motor ST-DT difference was unchanged over time in PwCOVID-19. CONCLUSION: In PwMCOVID-19, there is an impairment of DT counting while walking at baseline and after 6 months from hospitalization, with a more pronounced DT mutual interference pattern at T0. After 6 months, the motor and cognitive ST and DT performances ameliorated, not reaching the HC level.
Assuntos
COVID-19 , Disfunção Cognitiva , Humanos , Idoso , Pessoa de Meia-Idade , Cognição/fisiologia , Caminhada/fisiologia , Análise e Desempenho de Tarefas , Marcha/fisiologiaRESUMO
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 JovemRESUMO
Detailed data on post-stroke depression (PSD) in older adults are limited in spite of the high vulnerability of this population to stroke. In fact, PSD prevalence in older adults ranges from 16.0 to 43.9%; however, timing and instruments of evaluation often differ significantly across all available studies. The etiology, genetic and inflammatory factors, as well as structural brain alterations, are claimed as part of a multifaceted mechanism of action in PSD onset. Thus, the aim of this narrative review was to further elaborate on the prevalence, etiology, diagnosis, consequences and treatment of PSD in older adults. The consequences of PSD in older adults may be devastating, including a poor functional outcome after rehabilitation and lower medication adherence. In addition, lower quality of life and reduced social participation, higher risk of new stroke, rehospitalization, and mortality have been reported. In this scenario, treating PSD represents a crucial step to prevent these complications. Both pharmacological and non-pharmacological therapies are currently available. The pharmacological treatment utilizes antidepressant drugs, such as selective serotonin reuptake inhibitors (SSRIs), serotonin-norepinephrine reuptake inhibitors (SNRIs), monoamine oxidase inhibitors (MAOIs), tricyclic antidepressants (TAs) and new multimodal antidepressants (NMAs). Non-pharmacological therapies include psychological interventions and non-invasive brain stimulation techniques, while excluding drug administration. In the general population experiencing PSD, SSRIs (sertraline in particular) are the most prescribed, whereas the combination of antidepressants and psychotherapy is underused. Furthermore, about one-third of patients do not receive treatment for PSD. In regard to older adults with PSD, the possibility of more adverse effects or contraindications to antidepressant prescription due to comorbidities may limit the therapeutic window. Although drugs such as citalopram, escitalopram, sertraline, venlafaxine, and vortioxetine are usually well tolerated by older patients with PSD, the few randomized controlled trials (RCTs) specifically considering older adults with PSD have been conducted with fluoxetine, fluvoxamine, reboxetine, citalopram and nortriptyline, often with very small patient samples. Furthermore, data regarding the results of non-pharmacological therapies are scarce. High-quality RCTs recruiting large samples of older adults are needed in order to better manage PSD in this population. In addition, adequate screening and diagnosis instruments, with reliable timing of evaluation, should be applied.
Assuntos
Inibidores Seletivos de Recaptação de Serotonina , Sertralina , Idoso , Humanos , Antidepressivos/uso terapêutico , Citalopram/uso terapêutico , Depressão/complicações , Depressão/tratamento farmacológico , Depressão/epidemiologia , Sertralina/uso terapêutico , Ensaios Clínicos Controlados Aleatórios como AssuntoRESUMO
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 (44.5%) showed a preserved cognitive profile; phenotype 2 (22.8%) had a mild-cognitive impairment profile with attention difficulties; phenotype 3 (24.3%) included people with marked difficulties in visuo-executive, attention, language, memory and information processing speed; lastly, phenotype 4 (8.4%) grouped individuals with a multi-domain impairment profile (visuo-executive, attention, language, memory, orientation, information processing speed and mood disorders). Although some fluctuations occurred considering the rate of impairment, cognitive phenotypes did not substantially vary at follow up in terms of type and number of impairments, suggesting that 1 year is a relatively brief temporal window to observe considerable changes. Our results corroborate that investigating cognitive phenotypes and their stability over time would provide valuable information regarding CI and, in addition, increase clinical importance of PROs and CAOs and their uptake in decision-making and individualized treatment planning for PwMS.
Assuntos
Cognição , Esclerose Múltipla , Fenótipo , Humanos , Masculino , Feminino , Esclerose Múltipla/psicologia , Esclerose Múltipla/complicações , Adulto , Estudos Longitudinais , Pessoa de Meia-Idade , Cognição/fisiologia , Disfunção Cognitiva , Testes NeuropsicológicosRESUMO
Upper limb function is one of the most affected domains in people with multiple sclerosis (PwMS), as self-reported by 50% of patients. Heterogeneous results have been found about the correlation between objective and subjective upper limb function. The aim of the present study is to perform a systematic review and meta-analysis of studies presenting data on the strength of association between the gold standard for 9-Hole Peg Test scores and Patient-Reported Outcome Measures (PROMs) of manual ability. Primary research studies including assessments of 9-Hole Peg Test scores and Patient-Reported Outcome Measures were searched in Scopus, Web of Science, and PubMed. Meta analytical calculations were performed using a random-effects model. We retrieved n = 27 studies including n = 75 distinct effect sizes (N of subjects = 3263). The central tendency analysis showed a strong correlation between 9-HPT scores and PROMs (r = 0.51, 95% CI [0.44, 0.58]). Moderator analysis showed the effect size to be significantly larger in studies with a mean or median EDSS level indicating severe disability. The publication bias hypothesis was not supported; instead, we noted that studies based on larger samples also tend to report stronger effect sizes. Results of the study indicate that the correlation between 9-HPT and PROMs is strong, although the constructs measured by these instrument does not fully overlap. The correlation between 9-HPT and PROMs was stronger in larger studies and when samples include a sizeable subgroup of PwMS with severe disability, pointing out the importance of sample diversity.
Assuntos
Pessoas com Deficiência , Esclerose Múltipla , Humanos , Avaliação da Deficiência , Extremidade Superior , Medidas de Resultados Relatados pelo PacienteRESUMO
BACKGROUND: Multiple sclerosis (MS) affects the cognitive and motor domains. Muscle weakness often leads to abnormal gait. Several solutions are rising, including the use of passive exoskeletons. OBJECTIVE: The purpose of this study is to evaluate the effect of a first-ever use of a passive exoskeleton on walking ability in people with MS. METHODS: We recruited 50 persons with MS. All subjects were assessed using the 2-min walking test, the timed 25-foot walk test, and a two-stage rate of perceived exertion (RPE) without the exoskeleton (T0) and with the exoskeleton (T1). RESULTS: The data showed a significant decrease in walking endurance while the exoskeleton is worn (2-min walking test: T0: 65.19 ± 23.37 m; T1: 59.40 ± 22.99; p < 0.0001) and a not significant difference in walking speed on a shortened distance (T0: 15.71 ± 10.30 s; T1: 15.73 ± 11.86 s; p = 0.25). No significant differences were also found for the effort perception scale (RPE: T0: 13.24 ± 3.01; T1: 13.60 ± 2.9; p = 0.3). Seventy-two percent of subjects reported a positive or neutral global perceived effect. CONCLUSIONS: The exoskeleton does not add any fatiguing or negative effects. Although the walking performance decreases, the overall perception of the subjects is positive. Further studies are needed to evaluate the effect of the exoskeleton on gait quality.
RESUMO
BACKGROUND: The COVID-19 pandemic has led to reorganization or reduction of neurorehabilitation services for people with multiple sclerosis (PwMS). The aim of this study was to explore the changes in the organizational framework and technology usage in physiotherapy services for PwMS during the COVID-19 pandemic. METHODS: This international cross-sectional survey study was designed, developed, and disseminated by RIMS European Network for Best Practice and Research in Multiple Sclerosis Rehabilitation. Physiotherapists from nine countries (Australia, Belgium, Czech Republic, Ireland, Israel, Italy, Norway, Spain, Turkey) who provided physiotherapy services to PwMS, were invited to complete an online survey to compare physiotherapy delivery to PwMS prior to and during the pandemic period. RESULTS: The survey was completed by 215 physiotherapists. Accessibility, the average number, length and perceived effectiveness of physiotherapy sessions provided to PwMS were significantly reduced during the COVID-19 pandemic (p=0.001). Physiotherapists increased the advice of mobile apps, recorded videos for rehabilitation and exercise websites during the pandemic (p<0.001) while the use of telerehabilitation and virtual reality technology did not change. CONCLUSION: There was of a reduction in the number, duration and perceived effectiveness of rehabilitation sessions for people with multiple sclerosis during the COVID-19 pandemic while use of remote technologies for physiotherapy did not change. To ensure the continuity of physiotherapy for PwMS with complex healthcare needs also during pandemics, the provision of guidelines and training in telehealth technologies in professional education becomes crucial.
Assuntos
COVID-19 , Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Pandemias , Estudos Transversais , Modalidades de FisioterapiaRESUMO
Background: Heat sensitivity occurs in a high percentage of people with multiple sclerosis (PwMS), in response to environmental or exercise-induced increase in body temperature. However, the kinetic and magnitude of adaptation of the internal load and of the core body temperature (CBT) to a submaximal continuous exercise has been poorly addressed in PwMS; this may be relevant for the brief exercise bouts usually occurring in normal daily life. The aim of this work was to evaluate whether multiple sclerosis influences the acute adaptation of the internal load, the CBT and the perceptual load in response to a constant submaximal work step. Methods: CBT has been continuously monitored (0.5 Hz) by a validated wearable heat-flux sensor and electrocardiography was recorded (250 Hz) by a wearable device during a standard 6-minute walk test (6MWT) in 14 PwMS (EDSS, 4.7 ± 1.2; disease duration: 13.0 ± 10.2 years; m ± SD) and 14 age, sex and BMI-matched healthy subjects (HS). The rate of perceived exertion (RPE) of the lower limbs was assessed during the 6MWT by the Borg scale (6-20). Results: As expected, PwMS walked a significantly shorter distance (361 ± 98 m) than the HS group (613 ± 62 m, p<0.001 vs PwMS). However, the kinetics of adaptation of CBT and the magnitude of CBT change from baseline did not differ between groups. Similarly, heart rate (HR) kinetics and HR change from baseline were comparable between groups during the 6MWT. Finally, lower limbs RPE gradually increased during the exercise test, but without significant differences between groups. Conclusion: The internal load, the metabolic heat production, and the perceptive load due to a standard submaximal walking exercise seems to be preserved in PwMS, suggesting a comparable acute heat production and dissipation during exercise. Therefore, it is unlikely that the different distance achieved during the 6MWT may be caused by altered thermoregulatory responses to exercise. Rather, this appears to be a consequence of the known increased energy cost of locomotion in PwMS.
Assuntos
Esclerose Múltipla , Exercício Físico , Frequência Cardíaca , Humanos , Teste de Caminhada , Caminhada/fisiologiaRESUMO
BACKGROUND: Upper limb (UL) function is affected in about 50% of people with Multiple Sclerosis (PwMS). In the last decade, Patient Reported Outcome Measures (PROM) are playing an important role in clinical trial and practice. ABILIHAND-26 is a PROM that assess self-perceived manual ability defined as the capacity to manage daily activities using the upper limbs. The aim of the study is to translate the ABILHAND-26 into Italian, to explore its psychometric properties examining the associations with demographics, clinical variables, 9-Hole Peg Test (9-HPT) and Manual Ability Measures-36 (MAM-36). MATERIALS AND METHODS: Subjects were recruited in five Italian neurological centers. They were evaluated through ABILHAND-26, 9-HPT and MAM-36. Confirmatory factor analysis and Rasch analysis were adopted to investigate the psychometric properties of the ABILHAND-26. RESULTS: Two hundred and forty-five patients were recruited. Rasch analyses showed adequate functioning and supported the unidimensionality of the scale. ABILHAND-26 showed negative correlations with age and disease duration, moderate negative correlation with EDSS and the 9-HPT scores for both arms and strong positive associations (ρ ≥ .84) with the MAM-36. Difference in ABILHAND-26 scores only emerged when comparing patients with severe disability (EDSS ≥ 6) with patients with either mild or moderate disability. t) and when comapring relapsing-remitting and secondary progressive patients. CONCLUSION: The Italian version of the ABILHAND-26 is now available. It shows adequate reliability of the score, moderate criterion validity and strong convergent validity. ABILHAND-26 could represent a valid assessment for self-perceived ability to perform manual activity, especially for PwMS with moderate-to-high level of disability.