Temporal prediction of multiple sclerosis evolution from patient-centered outcomes

Multiple Sclerosis is a degenerative condition of the central nervous system that affects nearly 2.5 million of individuals in terms of their physical, cognitive, psychological and social capabilities. Despite the high variability of its clinical presentation, relapsing and progressive multiple sclerosis are considered the two main disease types, with the former possibly evolving into the latter. Recently, the attention of the medical community toward the use of patient-centered outcomes in multiple sclerosis has significantly increased. Such patient-friendly measures are devoted to the assessment of the impact of the disease on several domains of the patient life. In this work, we investigate on use of patient-centered outcomes to predict the evolution of the disease and to assess its impact on patients\u201a\uc4\uf4 lives. To this aim, we build a novel temporal model based on gradient boosting classification and multiple-output elastic-net regression. The model provides clinically interpretable results along with accurate predictions of the disease course evolution

Evaluation of handwriting movement kinematics: From an ecological to a magnetic resonance environment

Writing is a means of communication which requires complex motor, perceptual, and cognitive skills. If one of these abilities gets lost following traumatic events or due to neurological diseases, handwriting could deteriorate. Occupational therapy practitioners provide rehabilitation services for people with impaired handwriting. However, to determine the effectiveness of handwriting interventions no studies assessed whether the proposed treatments improved the kinematics of writing movement or had an effect at the level of the central nervous system. There is need to find new quantitative methodologies able to describe the behavioral and the neural outcomes of the rehabilitative interventions for handwriting. In the present study we proposed a combined approach that allowed evaluating the kinematic parameters of handwriting movements, acquired by means of a magnetic resonance-compatible tablet, and their neural correlates obtained simultaneously from a functional magnetic resonance imaging examination. Results showed that the system was reliable in term of reproducibility of the kinematic data during a test/re-test procedure. Further, despite the modifications with respect to an ecological writing movement condition, the kinematic parameters acquired inside the MR-environment were descriptive of individuals\u2019 movement features. At last, the imaging protocol succeeded to show the activation of the cerebral regions associated with the production of writing movement in healthy people. From these findings, this methodology seems to be promising to evaluate the handwriting movement deficits and the potential alterations in the neural activity in those individuals who have handwriting difficulties. Finally, it would provide a mean to quantitatively assess the effect of a rehabilitative treatment

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

Background The broad implications of caring for a family member with a chronic medical condition, such as MS, can lead caregivers to experience a high burden of care. The aim of the study was to describe profile of MS caregivers and their burden and to explore potential factors influencing this burden. Methods 200 family caregivers of a person with MS completed survey questionnaires across a cross-sectional study. Many information were collected: caregiver socio-demographic and health-related data, caregiving activities, knowledge of MS, coping strategies, mood, social support received and care recipient information. Caregiving burden was measured by the ZBI (Zarit Burden Interview). The extent to which the variables explained caregiver burden was analyzed using a hierarchical approach. Results 68% of the caregivers reported a perceived burden of care (ZBI score > 20). Our results show that physical and mental related-health variables are important predictive factors of the care burden, explaining much of the observed variance (40.9%). Conclusion Family caregivers in MS continue to make up the shortfall produce by national health and welfare systems. We highlighted the importance of good physical and mental health in decreasing perceived burden. Working to alleviate psychological distress through mechanisms focus on reducing worries and perceived burden may be a valid approach

MS bladder check tool:Development and validation of a patient awareness tool to facilitate timely management of lower urinary tract dysfunction due to multiple sclerosis

Background: Lower urinary tract dysfunction impacts quality of life of people with MS; often, symptoms are ‘lived with’ or deprioritised by healthcare providers (HCPs). Consequently, patients must be given the skills they need to become confident in managing their illness and enhance their involvement in the process. Objective: To develop and validate a self-assessment tool to help people with MS become more aware of their bladder symptoms and prompt contact with their HCP to facilitate timely management and specialist referral, if required. Methods: The ‘MS bladder check tool’ was developed by a multidisciplinary panel of specialist advisors. Consensus meetings and pilot testing were conducted to design and evolve the tool into a series of nine questions, using population-appropriate language, and covering all aspects of bladder dysfunction in MS. The tool was then validated by an international, multidisciplinary team of experts. Results: Validity was rated ‘excellent’ for all questions indicating that the MS bladder check tool is an appropriate method of highlighting bladder problems in people with MS. Conclusion: The MS bladder check tool is simple, easy-to-use, and empowers patients to take charge of their urinary tract health, aiming to improve the management of MS and, ultimately, patient quality of life.</p

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

ObjectivesKnowledge about multiple sclerosis (MS) is crucial for those who provide care and support as caregivers. However, despite the key benefits of acquiring relevant information to properly assume the caregiving role, caregivers' knowledge of MS is poorly investigated. The aim of this study was to develop and validate the Caregivers' Knowledge of Multiple Sclerosis (CareKoMS), a self-assessed questionnaire, to test MS knowledge in caregivers of people with MS. DesignCross-sectional study. SettingItaly. ParticipantsTwo-hundred caregivers (female: 49%) were asked to self-administer the 32-item CareKoMS questionnaire; they had a median age of 60 years (IQR: 51-68 years) and a medium-high educational level (36.5% primary school and 63.5% high school/university). Item analysis using item difficulty index, item discrimination index, Kuder-Richardson-20 coefficient and item-total correlation were assessed. Once excluding less useful items, reliability, floor and ceiling effects and construct validity were calculated on the 21-item CareKoMS final version. ResultsPsychometric evaluation indicates that the 21-item CareKoMS was a good questionnaire with no ceiling or floor effects registered. Internal consistency was satisfactory and acceptable as indicated by the mean value of 0.74 of Kuder-Richardson-20. No ceiling or floor effects have been observed. Interestingly, educational level and disease duration correlated with MS knowledge. ConclusionCareKoMS is a valid self-assessed questionnaire on MS knowledge for caregivers that may be used in clinical practice and research. Assessing knowledge of MS among caregivers is essential to facilitate their caregiving role and thus decrease the burden of disease management

MS bladder check tool:Development and validation of a patient awareness tool to facilitate timely management of lower urinary tract dysfunction due to multiple sclerosis

Background: Lower urinary tract dysfunction impacts quality of life of people with MS; often, symptoms are ‘lived with’ or deprioritised by healthcare providers (HCPs). Consequently, patients must be given the skills they need to become confident in managing their illness and enhance their involvement in the process. Objective: To develop and validate a self-assessment tool to help people with MS become more aware of their bladder symptoms and prompt contact with their HCP to facilitate timely management and specialist referral, if required. Methods: The ‘MS bladder check tool’ was developed by a multidisciplinary panel of specialist advisors. Consensus meetings and pilot testing were conducted to design and evolve the tool into a series of nine questions, using population-appropriate language, and covering all aspects of bladder dysfunction in MS. The tool was then validated by an international, multidisciplinary team of experts. Results: Validity was rated ‘excellent’ for all questions indicating that the MS bladder check tool is an appropriate method of highlighting bladder problems in people with MS. Conclusion: The MS bladder check tool is simple, easy-to-use, and empowers patients to take charge of their urinary tract health, aiming to improve the management of MS and, ultimately, patient quality of life.</p

Prioritizing progressive MS rehabilitation research: A call from the International Progressive MS Alliance

Cognition; Fatigue; MobilityCognición; Fatiga; MovilidadCognició; Fatiga; MobilitatBackground: People with multiple sclerosis (MS) experience myriad symptoms that negatively affect their quality of life. Despite significant progress in rehabilitation strategies for people living with relapsing-remitting MS (RRMS), the development of similar strategies for people with progressive MS has received little attention. Objective: To highlight key symptoms of importance to people with progressive MS and stimulate the design and implementation of high-quality studies focused on symptom management and rehabilitation. Methods: A group of international research experts, representatives from industry, and people affected by progressive MS was convened by the International Progressive MS Alliance to devise research priorities for addressing symptoms in progressive MS. Results: Based on information from the MS community, we outline a rationale for highlighting four symptoms of particular interest: fatigue, mobility and upper extremity impairment, pain, and cognitive impairment. Factors such as depression, resilience, comorbidities, and psychosocial support are described, as they affect treatment efficacy. Conclusions: This coordinated call to action—to the research community to prioritize investigation of effective symptom management strategies, and to funders to support them—is an important step in addressing gaps in rehabilitation research for people affected by progressive MS

Mind wandering in people with Multiple Sclerosis: A psychometric study

Background: Although mind wandering (MW) is associated with various psychological aspects frequently affected in people with Multiple Sclerosis (PwMS), there is lack of validated tools to assess MW in this clinical population.Objective: This psychometric study aimed to assess structural and construct validity and reliability of a brief Italian version of Mind Wandering (MW) Scale that measures two different dimensions of MW, i.e., spontaneous (MW-S) and deliberate (MW-D).Methods: Structural validity of the MW Scale was assessed by explorative factor analysis (EFA). To investigate construct validity, mood (Hospital Anxiety Depression Scale) and personality (10-items Big Five Inventory Test) were correlated with MW constructs. Reliability was assessed by Cronbach's alpha for internal consistency and intraclass correlation coefficients.Results: EFA confirmed two distinct constructs of MW, i.e., MW-S and MW-D, also in PwMS. This tool appropriately fits the graded response model, supporting validity (about 79% of hypotheses for convergent and discriminant constructs confirmed) and internal consistency (MW-S: Cronbach's alpha = 0.84; MW-D: Cronbach's alpha = 0.88).Conclusion: MW Scale could be a useful tool to measure MW also in PwMS. As MW seems to be connected to clinical manifestations of MS, a detailed assessment of MW should be encouraged in clinical practice

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

Priming is a learning process that refers to behavioral changes caused by previous exposure to a similar stimulus. Motor imagery (MI), which involves the mental rehearsal of action representations in working memory without engaging in actual execution, could be a strategy for priming the motor system. This study investigates whether MI primes action execution in Multiple Sclerosis (MS). Here, 17 people with MS (PwMS) and 19 healthy subjects (HS), all right-handed and good imaginers, performed as accurately and quickly as possible, with a pencil, actual or mental pointing movements between targets of small (1.0 x 1.0 cm) or large (1.5 x 1.5 cm) size. In actual trials, they completed five pointing cycles between the left and right targets, whereas in mental trials, the first 4 cycles were imagined while the fifth was actually executed. The fifth cycle was introduced to assess the MI priming effect on actual execution. All conditions, presented randomly, were performed with both dominant (i.e., right) and non-dominant arms. Analysis of the duration of the first 4 cycles in both actual and mental trials confirmed previous findings, showing isochrony in HS with both arms and significantly faster mental than actual movements (anisochrony) in PwMS (p &lt; 0.01) [time (s); HS right: actual: 4.23 +/- 0.15, mental: 4.36 +/- 0.16; left: actual: 4.32 +/- 0.15, mental: 4.43 +/- 0.18; PwMS right: actual: 5.85 +/- 0.16, mental: 5.99 +/- 0.21; left: actual: 6.68 +/- 0.20, mental: 5.94 +/- 0.23]; anisochrony in PwMS was present when the task was performed with the non-dominant arm. Of note, temporal analysis of the fifth actual cycle showed no differences between actual and mental trials for HS with both arms, whereas in PwMS the fifth actual cycle was significantly faster after the four actual cycles for the non-dominant arm (p &lt; 0.05) [time (s); HS right: actual: 1.03 +/- 0.04, mental: 1.03 +/- 0.03; left: actual: 1.08 +/- 0.04, mental: 1.05 +/- 0.03; PwMS right: actual: 1.48 +/- 0.04, mental: 1.48 +/- 0.06; left: actual: 1.66 +/- 0.05, mental: 1.48 +/- 0.06]. These results seem to suggest that a few mental repetitions of an action might be sufficient to exert a priming effect on the actual execution of the same action in PwMS. This would indicate further investigation of the potential use of MI as a new motor-cognitive tool for MS neurorehabilitation

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

As meaningful measure of cognitive impairment (CI), cognitive phenotypes provide an avenue for symptom management and individualized rehabilitation. Since CI is highly variable in severity and progression, monitoring cognitive phenotypes over time may be useful to identify trajectory of cognitive decline in Multiple Sclerosis (MS). Based on cognitive and mood information from patient-reported outcomes (PROs) and clinician-assessed outcomes (CAOs), four cognitive subgroups of people with MS (PwMS) were identified: phenotype 1 (44.5%) 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