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1.
J Neurol ; 271(5): 2195-2206, 2024 May.
Article in English | MEDLINE | ID: mdl-38409536

ABSTRACT

BACKGROUND: The heterogeneous nature of cognitive impairment in people with multiple sclerosis (PwMS) hampers understanding of the underlying mechanisms and developing patient-tailored interventions. We aim to identify and classify cognitive profiles in PwMS, comparing these to cognitive status (preserved versus impaired). METHODS: We included 1213 PwMS (72% female, age 45.4 ± 10.7 years, 83% relapsing-remitting MS). Cognitive test scores were converted to Z-scores compared to healthy controls for the functions: attention, inhibition, information processing speed (IPS), verbal fluency and verbal/visuospatial memory. Concerning cognitive status, impaired cognition (CI) was defined as performing at Z ≤ - 1.5 SD on ≥ 2 functions. Cognitive profiles were constructed using latent profile analysis on all cognitive functions. Cognitive profiles or status was classified using gradient boosting decision trees, providing the importance of each feature (demographics, clinical, cognitive and psychological functioning) for the overall classification. RESULTS: Six profiles were identified, showing variations in overall performance and specific deficits (attention, inhibition, IPS, verbal fluency, verbal memory and visuospatial memory). Across the profiles, IPS was the most impaired function (%CI most preserved profile, Profile 1 = 22.4%; %CI most impaired profile, Profile 6 = 76.6%). Cognitive impairment varied from 11.8% in Profile 1 to 95.3% in Profile 6. Of all cognitive functions, visuospatial memory was most important in classifying profiles and IPS the least (area under the curve (AUC) = 0.910). For cognitive status, IPS was the most important classifier (AUC = 0.997). CONCLUSIONS: This study demonstrated that cognitive heterogeneity in MS reflects a continuum of cognitive severity, distinguishable by distinct cognitive profiles, primarily explained by variations in visuospatial memory functioning.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Humans , Female , Male , Adult , Middle Aged , Cognitive Dysfunction/etiology , Cognitive Dysfunction/physiopathology , Cognitive Dysfunction/diagnosis , Multiple Sclerosis/complications , Multiple Sclerosis/physiopathology , Multiple Sclerosis/psychology , Spatial Memory/physiology , Neuropsychological Tests , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Multiple Sclerosis, Relapsing-Remitting/complications , Multiple Sclerosis, Relapsing-Remitting/psychology
2.
BMC Neurol ; 24(1): 26, 2024 Jan 13.
Article in English | MEDLINE | ID: mdl-38218777

ABSTRACT

BACKGROUND: Cognitive impairment occurs in up to 65% of people with multiple sclerosis (PwMS), negatively affecting daily functioning and health-related quality of life. In general, neuropsychological testing is not part of standard MS-care due to insufficient time and trained personnel. Consequently, a baseline assessment of cognitive functioning is often lacking, hampering early identification of cognitive decline and change within a person over time. To assess cognitive functioning in PwMS in a time-efficient manner, a BICAMS-based self-explanatory digital screening tool called the Multiple Screener©, has recently been developed. The aim of the current study is to validate the Multiple Screener© in a representative sample of PwMS in the Netherlands. Additionally, we aim to investigate how cognitive functioning is related to psychological factors, and both work and societal participation. METHODS: In this cross-sectional multicentre study, 750 PwMS (aged 18-67 years) are included. To obtain a representative sample, PwMS are recruited via 12 hospitals across the Netherlands. They undergo assessment with the Minimal Assessment of Cognitive Functioning in MS (MACFIMS; reference-standard) and the Multiple Screener©. Sensitivity, specificity, and predictive values for identifying (mild) cognitive impairment are determined in a subset of 300 participants. In a second step, the identified cut-off values are tested in an independent subset of at least 150 PwMS. Moreover, test-retest reliability for the Multiple Screener© is determined in 30 PwMS. Information on psychological and work-related factors is assessed with questionnaires. DISCUSSION: Validating the Multiple Screener© in PwMS and investigating cognition and its determinants will further facilitate early identification and adequate monitoring of cognitive decline in PwMS.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/psychology , Quality of Life/psychology , Reproducibility of Results , Cross-Sectional Studies , Cognitive Dysfunction/diagnosis , Cognitive Dysfunction/etiology , Cognition , Neuropsychological Tests , Multicenter Studies as Topic
3.
BMC Neurol ; 24(1): 28, 2024 Jan 15.
Article in English | MEDLINE | ID: mdl-38225561

ABSTRACT

BACKGROUND: Up to 65% of people with multiple sclerosis (PwMS) develop cognitive deficits, which hampers their ability to work, participating in day-to-day life and ultimately reducing quality of life (QoL). Early cognitive symptoms are often less tangible to PwMS and their direct environment and are noticed only when symptoms and work functioning problems become more advanced, i.e., when (brain) damage is already advanced. Treatment of symptoms at a late stage can lead to cognitive impairment and unemployment, highlighting the need for preventative interventions in PwMS. AIMS: This study aims to evaluate the (cost-) effectiveness of two innovative preventative interventions, aimed at postponing cognitive decline and work functioning problems, compared to enhanced usual care in improving health-related QoL (HRQoL). METHODS: Randomised controlled trial including 270 PwMS with mild cognitive impairment, who have paid employment ≥ 12 h per week and are able to participate in physical exercise (Expanded Disability Status Scale < 6.0). Participants are randomised across three study arms: 1) 'strengthening the brain' - a lifestyle intervention combining personal fitness, mental coaching, dietary advice, and cognitive training; 2) 'strengthening the mind' - a work-focused intervention combining the capability approach and the participatory approach in one-on-one coaching by trained work coaches who have MS themselves; 3) Control group-receiving general information about cognitive impairment in MS and receiving care as usual. Intervention duration is four months, with short-term and long-term follow-up measurements at 10 and 16 months, respectively. The primary outcome measure of the Don't be late! intervention study will be HRQoL as measured with the 36-item Short Form. Secondary outcomes include cognition, work related outcomes, physical functioning, structural and functional brain changes, psychological functioning, and societal costs. Semi-structured interviews and focus groups with stakeholders will be organised to qualitatively reflect on the process and outcome of the interventions. DISCUSSION: This study seeks to prevent (further) cognitive decline and job loss due to MS by introducing tailor-made interventions at an early stage of cognitive symptoms, thereby maintaining or improving HRQoL. Qualitative analyses will be performed to allow successful implementation into clinical practice. TRIAL REGISTRATION: Retrospectively registered at ClinicalTrials.gov with reference number NCT06068582 on 10 October 2023.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/therapy , Quality of Life , Unemployment , Cognitive Dysfunction/prevention & control , Exercise , Randomized Controlled Trials as Topic
4.
eNeurologicalSci ; 28: 100409, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35733640

ABSTRACT

Background: Cognitive dysfunction is common in multiple sclerosis and may worsen with reduced treatment adherence. We examined longitudinal relationships between anxiety, depression, fatigue, disability and adherence with cognitive status in patients with relapsing-remitting multiple sclerosis (MS) treated with interferon beta-1a in four countries. Methods: The Confidence study is a prospective study in 165 people with MS with four visits (baseline/12/24/36 months). Physical and psychological symptoms were assessed using standardized questionnaires. Adherence was calculated as the number of injections divided by number of expected injections. Cognitive status was assessed by the Brief Repeatable Battery of Neuropsychological Tests and converted to a global Z-score. Results: At baseline, mean age was 35.7 ± 11 years and 66% were female (n = 109). Adherence to treatment was very high throughout the study (>99%). A depression score ≥ 8 was significantly associated with a higher risk of low cognitive status compared with a lower score (0-7): relative risk 1.79 (1.14-2.83) adjusted for education and time since diagnosis. The P-value-for-time was not significant (P = 0.304) meaning that associations existed since baseline and remained stable during follow-up. Conclusion: Our findings provide evidence for a longitudinal association between depression and low cognitive status in patients treated with interferon beta-1a in routine medical practice.

5.
Mult Scler Relat Disord ; 58: 103423, 2022 Feb.
Article in English | MEDLINE | ID: mdl-35216792

ABSTRACT

OBJECTIVE: Spatial navigation has a crucial function in daily life activities, and is therefore strongly linked to quality of life, autonomy, and mobility. Navigation has been shown to be frequently impaired after forms of acquired brain injury, but the impact of MS on navigation ability has yet to be studied. A better understanding of potential navigation problems in this population could improve patient care. Therefore the aim of the current study was to measure objective and subjective navigation performance in people with MS. METHODS: Performance of a large sample of people with MS (N = 359) was compared to a group of matched controls. Additionally, the impact of ambulation and self-reported cognitive performance was studied within the MS sample. Participants filled out the Wayfinding Questionnaire, the patient-reported Expanded Disability Status Scale and the Multiple Sclerosis Neuropsychological Screening Questionnaire for self-report measures. Objective navigation performance was measured with an online navigation test using a virtual environment. RESULTS: Results indicate a lower subjective as well as objective performance in people with MS compared to healthy controls, and a substantial contribution of self-reported cognitive performance on navigation ability. CONCLUSIONS: These findings indicate that spatial navigation can be a significant problem in people with MS, especially in people with MS with other cognitive impairments.


Subject(s)
Cognitive Dysfunction , Multiple Sclerosis , Spatial Navigation , Cognitive Dysfunction/etiology , Humans , Multiple Sclerosis/complications , Quality of Life , Surveys and Questionnaires
6.
Disabil Rehabil ; 44(23): 7096-7105, 2022 11.
Article in English | MEDLINE | ID: mdl-34607481

ABSTRACT

PURPOSE: This study aimed to identify mental health, physical health, demographic and disease characteristics relating to work productivity in people with multiple sclerosis (MS). METHODS: In this cross-sectional study, 236 employed people with MS (median age = 42 years, 78.8% female) underwent neurological and neuropsychological assessments. Additionally, they completed questionnaires inquiring about work productivity (presenteeism: reduced productivity while working, and absenteeism: loss of productivity due to absence from work), mental and physical health, demographic and disease characteristics. Multiple linear and logistic regression analyses were performed with presenteeism and absenteeism as dependent variables, respectively. RESULTS: A model with mental and physical health factors significantly predicted presenteeism F(11,202) = 11.33, p < 0.001, R2 = 0.38; a higher cognitive (p < 0.001) and physical impact (p = 0.042) of fatigue were associated with more presenteeism. A model with only mental health factors significantly predicted absenteeism; χ2(11)=37.72, p < 0.001, with R2 = 0.27 (Nagelkerke) and R2 = 0.16 (Cox and Snell). Specifically, we observed that more symptoms of depression (p = 0.041) and a higher cognitive impact of fatigue (p = 0.011) were significantly associated with more absenteeism. CONCLUSIONS: In people with MS, both cognitive and physical impact of fatigue are positively related to presenteeism, while symptoms of depression and cognitive impact of fatigue are positively related to absenteeism.Implications for rehabilitationMultiple sclerosis (MS) affects people of working age, significantly interfering with work productivity.Higher cognitive and physical impact of fatigue were associated with more presenteeism in workers with MS.A higher cognitive impact of fatigue and more depressive symptoms were associated with absenteeism in workers with MS.Occupational and healthcare professionals should be aware of the impact of both physical and mental health on work productivity in workers with MS.


Subject(s)
Multiple Sclerosis , Female , Humans , Adult , Male , Self Report , Multiple Sclerosis/complications , Multiple Sclerosis/psychology , Cross-Sectional Studies , Efficiency , Fatigue/complications
7.
Disabil Rehabil ; 43(13): 1924-1933, 2021 06.
Article in English | MEDLINE | ID: mdl-31702954

ABSTRACT

PURPOSE: The current study aimed to evaluate the psychometric properties of the Dutch version of the Multiple Sclerosis Work Difficulties Questionnaire-23 (MSWDQ-23). METHODS: Two hundred and thirty-nine employed persons with multiple sclerosis (MS) and 59 healthy controls completed the MSWDQ-23. To verify the factor structure, a confirmatory factor analysis was conducted. To assess construct validity, the MSWDQ-23 scores were correlated to measures of physical disability, fatigue, cognitive and neuropsychiatric problems, depression, health-related quality of life, and work-related variables. MSWDQ-23 scores were compared within different age groups, gender, education levels, and job types. Predictive validity was assessed using a logistic regression analysis to predict a deterioration in employment status after one year based on MSWDQ-23 scores. RESULTS: The internal consistency of the MSWDQ-23 was acceptable (α = 0.913, 95% CI = 0.897-0.928) and the results indicated a fair fit. The MSWDQ-23 showed acceptable construct validity, confirming 94% of the hypotheses. The total scale and the psychological/cognitive subscale were able to predict a deterioration in employment status after one year (χ2(1)=18.164, p < 0.001). CONCLUSIONS: The Dutch version of the MSWDQ-23 is a valid and internally consistent instrument to measure self-reported work difficulties in persons with MS.Implications for rehabilitationThe Dutch version of the 23-item Multiple Sclerosis Work Difficulties Questionnaire (MSWDQ-23) is a reliable and valid tool to measure self-reported work difficulties in people with multiple sclerosis (MS).More psychological and cognitive work difficulties are predictive of a deteriorated employment status after one year.The MSWDQ-23 is a helpful tool for researchers and (occupational) health professionals to identify current work difficulties in persons with MS and identify persons at risk for a deterioration in employment one year later.


Subject(s)
Multiple Sclerosis, Relapsing-Remitting , Multiple Sclerosis , Employment , Humans , Quality of Life , Reproducibility of Results , Surveys and Questionnaires
8.
Front Neurol ; 12: 734251, 2021.
Article in English | MEDLINE | ID: mdl-35095710

ABSTRACT

Background: The cognitive and neuropsychiatric deficits present in patients with behavioral variant frontotemporal dementia (bvFTD) are associated with loss of functionality in the activities of daily living (ADLs). The main purpose of this study was to examine and explore the association between the cognitive and neuropsychiatric features that might prompt functional impairment of basic, instrumental, and advanced ADL domains in patients with bvFTD. Methods: A retrospective cross-sectional study was conducted with 27 patients with bvFTD in its early stage (<2 years of evolution) and 32 healthy control subjects. A neuropsychological assessment was carried out wherein measures of cognitive function and neuropsychiatric symptoms were obtained. The informant-report Technology-Activities of Daily Living Questionnaire was used to assess the percentage of functional impairment in the different ADL domains. To identify the best determinants, three separate multiple regression analyses were performed, considering each functional impairment as the dependent variable and executive function, emotion recognition, disinhibition, and apathy as independent variables. Results: For the basic ADLs, a model that explains 28.2% of the variability was found, in which the presence of apathy (ß = 0.33, p = 0.02) and disinhibition (ß = 0.29, p = 0.04) were significant factors. Concerning instrumental ADLs, the model produced accounted for 63.7% of the functional variability, with the presence of apathy (ß = 0.71, p < 0.001), deficits in executive function (ß = -0.36, p = 0.002), and lack of emotion recognition (ß = 0.28, p = 0.017) as the main contributors. Finally, in terms of advanced ADLs, the model found explained 52.6% of the variance, wherein only the presence of apathy acted as a significant factor (ß = 0.59, p < 0.001). Conclusions: The results of this study show the prominent and transverse effect of apathy in the loss of functionality throughout all the ADL domains. Apart from that, this is the first study that shows that the factors associated with loss of functionality differ according to the functional domain in patients with bvFTD in its early stage. Finally, no other study has analyzed the impact of the lack of emotion recognition in the functionality of ADLs. These results could guide the planning of tailored interventions that might enhance everyday activities and the improvement of quality of life.

9.
Neurol Sci ; 40(12): 2555-2564, 2019 Dec.
Article in English | MEDLINE | ID: mdl-31321625

ABSTRACT

BACKGROUND: Cognitive functioning has been linked to employment outcomes in multiple sclerosis (MS) in cross-sectional studies. Longitudinal studies are however lacking and previous studies did not extensively examine executive functioning. OBJECTIVES: We examined whether baseline cognitive functioning predicts a change in employment status after 2 years, while taking into account mood, fatigue and disability level. METHODS: A total of 124 patients with relapsing-remitting MS (pwMS) and 60 healthy controls were included. They underwent neurological and neuropsychological examinations and completed online questionnaires. PwMS were divided into a stable and deteriorated employment status group (SES and DES), based on employment status 2 years after baseline. We first examined baseline differences between the SES and DES groups in cognitive functioning, mood, fatigue and disability level. A logistic regression analysis was performed, with change in employment status (SES/DES) as dependent variable. RESULTS: The DES group included 22% pwMS. Group differences were found in complex attention, executive functioning, self-reported cognitive functioning, fatigue and physical disability. More physical disability (OR = 1.90, p = 0.01) and lower executive functioning (OR = 0.30, p = 0.03) were retained as independent predictors of DES (R2 = 0.22, p ≤ 0.001). CONCLUSIONS: Baseline physical disability and executive functioning, but none of the other variables, moderately predicted a deterioration in employment status 2 years later. TRIAL REGISTRATION: This observational study is registered under NL43098.008.12: 'Voorspellers van arbeidsparticipatie bij mensen met relapsing-remitting Multiple Sclerose'. This study is registered at the Dutch CCMO register (https://www.toetsingonline.nl).


Subject(s)
Attention/physiology , Cognitive Dysfunction/physiopathology , Employment , Executive Function/physiology , Fatigue/physiopathology , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Severity of Illness Index , Adult , Female , Humans , Longitudinal Studies , Male , Middle Aged , Young Adult
10.
Ned Tijdschr Geneeskd ; 1632019 05 31.
Article in Dutch | MEDLINE | ID: mdl-31187960

ABSTRACT

Approximately 34-65% of patients with multiple sclerosis (MS) are confronted with cognitive problems sooner or later. These include problems with the speed of information processing, memory, attention and executive functioning. Cognitive problems in patients with MS are currently often not examined on a routine basis and therefore remain unrecognised, or are not recognised in time. This may have a negative impact on their work and lead to social problems. In this article, we talk about the importance of early recognition of cognitive problems in patients with MS. Routine questioning about cognitive problems and the use of a short screening test are first steps in the right direction.


Subject(s)
Attention , Cognition Disorders/etiology , Cognition , Memory, Short-Term , Multiple Sclerosis/physiopathology , Psychomotor Performance , Adult , Executive Function , Female , Humans , Male , Middle Aged , Multiple Sclerosis/complications , Neuropsychological Tests
11.
Disabil Rehabil ; 40(21): 2545-2552, 2018 10.
Article in English | MEDLINE | ID: mdl-28639482

ABSTRACT

BACKGROUND: The aim of this study was to gain insight into the meaning of work in the everyday lives of people with relapsing-remitting multiple sclerosis, and the barriers and facilitators to staying in work. METHODS: Nineteen employed adults diagnosed with relapsing-remitting multiple sclerosis participated in narrative interviews. All interviews were transcribed and coded for thematic analysis. RESULTS: For people with relapsing-remitting multiple sclerosis, continuing to work was a precarious balancing act. Five themes influenced this balance: becoming familiar with the disease, adjusting expectations, having an understanding and realistic line manager, seeing work as meaningful life activity and strategic considerations. CONCLUSIONS: People receiving a diagnosis of relapsing-remitting multiple sclerosis have to refamiliarize themselves with their own body in a meaningful way to be able to continue their work. Rehabilitation professionals can support them herein by taking into account not merely functional capabilities but also identity aspects of the body. Medication that stabilizes symptoms supports making the necessary adjustments. A trusting relationship with the line manager is vital for this adaptation process. Additionally, a match between being adequately challenged by work, while still having the capacity to meet those work demands, is needed, as is long-term financial stability. Implications for rehabilitation Rehabilitation professionals can support employees with relapsing-remitting multiple sclerosis by taking into account not merely functional capabilities but also identity aspects of the body. A trusting relationship with the line manager, including a timely disclosure of the diagnosis, is vital for people with relapsing-remitting multiple sclerosis to remain at work. For people with relapsing-remitting multiple sclerosis, there is a delicate balance between being adequately challenged by work while still having the capacity to meet work demands.


Subject(s)
Employment , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Multiple Sclerosis, Relapsing-Remitting/psychology , Adaptation, Physiological , Adaptation, Psychological , Adult , Female , Humans , Interviews as Topic , Male , Middle Aged , Netherlands
12.
Subst Use Misuse ; 52(5): 574-580, 2017 04 16.
Article in English | MEDLINE | ID: mdl-28033476

ABSTRACT

BACKGROUND: Alcohol dependence is associated with impairments in cognition, especially in later life. Previous studies suggest that excessive drinking has more negative impact on cognition in women than in men. OBJECTIVES: In this study, differences in cognition between male and female older, alcohol-dependent patients were examined. METHOD: Older alcohol-dependent inpatients (N = 164, 62.2% men, mean age 62.6 ± 6.4) underwent neuropsychological tests of sensitivity to interference, mental flexibility, and visual processing. RESULTS: No gender differences were found in age, educational level, estimated premorbid verbal intelligence, and sensitivity to interference. Duration of alcohol dependence was longer for men than for women. Men performed better than women on visual processing, and women better than men on mental flexibility. The superior mental flexibility of women remained significant after adjustment for duration of alcohol dependence. Conclusions/Importance: Older alcohol-dependent inpatients performed below average on cognitive tasks, which suggests that long-term excessive alcohol use negatively affects cognition. Our study does not demonstrate more severe cognitive impairment in women than in men.


Subject(s)
Alcoholism/psychology , Cognition , Age Factors , Female , Humans , Male , Middle Aged , Neuropsychological Tests , Sex Factors
13.
Arch Clin Neuropsychol ; 31(8): 868-876, 2016 Dec 01.
Article in English | MEDLINE | ID: mdl-27600448

ABSTRACT

INTRODUCTION: Alzheimer's disease (AD) presents with significant neuropsychological deficits. Cognitive training in AD has recently started to demonstrate its efficacy. In this study, we implemented computerized cognitive training of a large group of early-stage AD patients, to identify its effects at a neuropsychological level and to investigate whether they were stable after 6 months. METHOD: Overall, 80 AD patients were randomized in two groups. Patients in the experimental group used a structured rehabilitative software three times a week for 12 consecutive weeks aimed at training memory, attention, executive function and language skills, whereas patients in the control group underwent a control intervention. RESULTS: A Repeated Measures General Linear Model considering groups' performance at the three assessment points (before training, after training and at the 6-month follow-up) showed a significant interaction effect for: digit span forward (F(2,74) = 2.785, p = 0.03) and backward (F(2,74) = 3.183, p = 0.02), two-syllable words test (F(2,74) = 3.491, p = 0.004), Rivermead Behavioural Memory Test immediate (F(2,74) = 2.877, p = 0.03) and delayed (F(2,74) = 3.783, p = 0.003), Token test (F(2,74) = 4.783, p = 0.001), and Brixton test (F(2,74) = 8.783, p < 0.001). For all of them, experimental group performed better than controls. CONCLUSIONS: Patients in the experimental group showed a significant improvement in various neuropsychological domains, and their achievements were stable after 6 months. This study suggests an useful computerized training in AD, and should prompt further investigations about the generalizability of patients' acquired skills to more ecologically oriented tasks.

14.
Patient Prefer Adherence ; 10: 659-67, 2016.
Article in English | MEDLINE | ID: mdl-27175066

ABSTRACT

BACKGROUND: The adherence to treatment with injectable disease-modifying drugs (DMDs) in multiple sclerosis (MS) may benefit from adequate information provision and management of expectations. The communication between patients and physicians is very important in this respect. The current study investigated the perspectives and experiences of the MS patients and neurologists concerning the choice and course of treatment with DMDs in the Netherlands. METHODS: The MS patients (aged 18-60 years; diagnosed with MS at least a year ago, currently treated with injectable DMD treatment) and MS-specialized neurologists (practicing for ≥3 years, treating ≥15 MS patients/month on average, and spending >60% of their time in clinical practice) were asked to complete semistructured Internet-based questionnaires. The neurologists in this study were not necessarily the treating neurologists of the participating MS patients. RESULTS: In all, 107 MS patients and 18 MS-specialized neurologists completed the questionnaires. The MS-specialized neurologists in this study reported discussing most of the suggested treatment goals with their patients. The MS patients indicated that certain important treatment goals, ie, reduction in disease progression, reduction or prolongation of time to long-term disability, and reduction in new magnetic resonance imaging lesions, were not discussed with them. More than one-quarter of the patients (27%) would appreciate more information about their treatment. We found evidence for suboptimal patient adherence to MS therapy (23% indicated taking a treatment break) due to diverse side effects, lack of efficacy, or practical issues. As compared to these patient reports, the scale of poor adherence was overestimated by more than half of the neurologists (on average, 30% estimated treatment breaks). CONCLUSION: The MS patients and MS-specialized neurologists in this study differ in their experiences and perspectives on information provision and adherence to DMDs. Education programs and up-to-date information on MS treatments for both neurologists and patients may be helpful in improving patient involvement and patient-physician communication.

15.
BMC Neurol ; 15: 134, 2015 Aug 12.
Article in English | MEDLINE | ID: mdl-26264389

ABSTRACT

BACKGROUND: Multiple Sclerosis (MS) is the most common cause of neurological disability in young and middle-aged adults. At this stage in life most people are in the midst of their working career. The majority of MS patients are unable to retain employment within 10 years from disease onset. Leading up to unemployment, many may experience a reduction in hours or work responsibilities and increased time missed from work. The MS@Work study examines various factors that may influence work participation in relapsing-remitting MS patients, including disease-related factors, the working environment and personal factors. METHODS/DESIGN: The MS@Work study is a multicenter, 3-year prospective observational study on work participation in patients with relapsing-remitting MS. We aim to include 350 patients through 15-18 MS outpatient clinics in the Netherlands. Eligible participants are 18 years and older, and either currently employed or within three years since their last employment. At baseline and after 1, 2 and 3 years, the participants are asked to complete online questionnaires (including questions on work participation, work problems and accommodations, cognitive and physical ability, anxiety, depression, psychosocial stress, quality of life, fatigue, empathy, personality traits and coping strategies) and undergo cognitive and neurological examinations. After six months, patients are requested to only complete online questionnaires. Patient perspectives on maintaining and improving work participation and reasons to stop working are gathered through semi-structured interviews in a sub-group of patients. DISCUSSION: Prospective studies with long-term follow-up on work participation in MS are rare, or take into account a limited number of factors. The MS@Work study provides a 3-year follow-up on various factors that may influence work participation in patients with relapsing-remitting MS. We aim to identify factors that relate to job loss and to provide information about preventative measures for physicians, psychologists and other professionals working in the field of occupational health.


Subject(s)
Employment , Fatigue , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Multiple Sclerosis, Relapsing-Remitting/psychology , Adolescent , Adult , Aged , Anxiety/complications , Depression/complications , Female , Humans , Male , Middle Aged , Netherlands , Prospective Studies , Quality of Life , Research Design , Surveys and Questionnaires , Young Adult
16.
PLoS One ; 10(6): e0129228, 2015.
Article in English | MEDLINE | ID: mdl-26083386

ABSTRACT

The majority of patients with Multiple Sclerosis (MS) are unable to retain employment within 10 years from disease onset. Executive abilities, such as planning, working memory, attention, problem solving, inhibition and mental flexibility may have a direct impact on the ability to maintain a job. This study investigated differences in subjective and objective executive abilities between relapsing-remitting MS patients with and without a paid job. We included 55 relapsing-remitting MS patients from a community-based sample (47 females; mean age: 47 years; 36% employed). Patients underwent neurological, cognitive and psychological assessments at their homes, including an extensive executive test battery. We found that unemployed patients had a longer disease duration (t(53)=2.76, p=0.008) and reported more organising and planning problems (χ2(1)=6.3, p=0.012), higher distractibility (Kendall's tau-b= -0.24, p=0.03) and more cognitive fatigue (U=205.0, p=0.028, r=-0.30) than employed patients. Unemployed patients completed slightly less categories on the Wisconsin Card Sorting Test (U=243.5, p=0.042, r=-0.28). Possible influential factors such as age, educational level, physical functioning, depression and anxiety did not differ between groups. In conclusion, while relapsing-remitting MS patients without a paid job reported more executive problems and cognitive fatigue than patients with a paid job, little differences were found in objective executive abilities. Further research is needed to examine possible causal relations.


Subject(s)
Employment , Executive Function , Multiple Sclerosis, Relapsing-Remitting/physiopathology , Adult , Female , Humans , Male , Middle Aged , Multiple Sclerosis, Relapsing-Remitting/psychology
17.
J Neuropsychol ; 9(1): 10-20, 2015 Mar.
Article in English | MEDLINE | ID: mdl-24151858

ABSTRACT

BACKGROUND: Earlier research has found cross-sectional attentional control deficits in manifest Huntington's disease (HD) using neuropsychological testing combined with simultaneous P300 registration. In the current pilot-study, we investigate attentional control in pre-manifest and manifest HD over a 3-year follow-up period. METHOD: Five manifest HD (MHD), 9 pre-manifest HD (PMHD), and 12 control subjects were included. Sustained Attention to Response task (SART) and P300 registration resulted in number of errors, reaction time (RT), and P300 amplitude and latency. RT change patterns surrounding No-go trials were also investigated. Within-subject differences were tested using paired-samples t-tests and between-group results with ANCOVA on delta scores (follow-up--baseline scores). RESULTS: Manifest HD made more errors and were slower than controls and PMHD. Longitudinally, MHD showed an overall RT increase and a specific slowing on trials preceding a correct No-go trial (within-group effects). The latter was also seen in PMHD. P300 latency prolongation was found for controls on No-go and for MHD on Go trials. On specific trials surrounding both correct and incorrect No-go trials, MHD became significantly slower over time than controls and PMHD (between-group effects). CONCLUSIONS: Over 3-years, MHD subjects became slower on the SART and showed a prolongation of P300 latency on specific SART trials. Specific slowing of performance over time was also seen in PMHD, suggestive of compensatory mechanisms in this group.


Subject(s)
Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/etiology , Event-Related Potentials, P300/physiology , Huntington Disease/complications , Reaction Time/physiology , Adult , Analysis of Variance , Cross-Sectional Studies , Electroencephalography , Female , Humans , Longitudinal Studies , Male , Middle Aged , Neuropsychological Tests , Pilot Projects
18.
PLoS One ; 9(8): e105673, 2014.
Article in English | MEDLINE | ID: mdl-25153710

ABSTRACT

BACKGROUND: Up to 30% of recently diagnosed MS patients lose their jobs in the first four years after diagnosis. Taking into account the personal and socio-economic importance of sustaining employment, it is of the utmost importance to examine factors involved with work participation. OBJECTIVE: To investigate differences in self-reported functioning in recently diagnosed MS patients with and without a paid job. METHODS: Self-reports of physical and cognitive functioning, depression, anxiety and fatigue were gathered from 44 relapsing-remitting MS patients diagnosed within 3 years. RESULTS: Patients with a paid job (57%) reported better physical functioning (p<0.001), better memory functioning (p = 0.01) and a lower physical impact of fatigue (p = 0.018) than patients without a paid job. Physical functioning was the main predictor of employment status in a logistic regression model. In those with a paid job better memory functioning (r = 0.54, p = 0.005) and a lower social impact of fatigue (r =  -0.46, p = 0.029) correlated with an increased number of working hours. CONCLUSION: Better physical functioning is the primary factor involved with increased work participation in early MS. Better self-reported memory functioning and less social fatigue were associated with increased working hours. These findings highlight the importance of battling these symptoms in the early stages of MS.


Subject(s)
Anxiety/complications , Depression/complications , Employment , Fatigue/complications , Multiple Sclerosis/complications , Work , Adult , Cognition , Female , Humans , Male , Memory , Middle Aged , Neuropsychological Tests , Pilot Projects , Surveys and Questionnaires
20.
J Neurol Sci ; 320(1-2): 85-90, 2012 Sep 15.
Article in English | MEDLINE | ID: mdl-22795386

ABSTRACT

There is growing evidence for the association between stress and relapse risk in multiple sclerosis (MS). The current study focuses on daily hassles, which by their chronic and accumulating nature can cause considerable psychosocial stress. The main aim was to investigate the frequency, associated distress and type of daily hassles encountered by Dutch MS patients from a large community-based sample. We further examined factors associated with high levels of psychosocial stress. Questionnaires concerning demographics, disease characteristics, physical functioning, daily hassles, fatigue, depression and anxiety were completed by 718 MS patients. Three patients younger than 18 were excluded, resulting in 715 patients. Compared with published norm data, more than 50% of the participants reported a high number of daily hassles (57.5%) and high levels of associated distress (55.7%). Frequently mentioned daily hassles concern personal functioning and social developments. A logistic regression model revealed that being female, being younger, having a higher educational level, using benzodiazepines, exhibiting more symptoms of anxiety, and a higher physical impact of fatigue were all independently associated with high levels of psychosocial stress. Our findings may alert clinicians of the high prevalence and impact of daily hassles in MS and underline the need to incorporate stress and anxiety management strategies in (psycho)therapeutic interventions.


Subject(s)
Anxiety/epidemiology , Depression/epidemiology , Multiple Sclerosis/psychology , Social Environment , Stress, Psychological/epidemiology , Stress, Psychological/psychology , Anxiety/complications , Anxiety/psychology , Comorbidity , Depression/complications , Depression/psychology , Fatigue , Female , Humans , Logistic Models , Male , Middle Aged , Multiple Sclerosis/complications , Multiple Sclerosis/diagnosis , Multiple Sclerosis/epidemiology , Netherlands/epidemiology , Psychiatric Status Rating Scales/statistics & numerical data , Risk Factors , Stress, Psychological/complications , Surveys and Questionnaires
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