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• The Whereabouts app creates a unique individual societal participation profile. • The app creates a real-time timeline of specific participation activities. • The app assess participation with ratings of meaningfulness and perceived strain. • The app is a potential valuable tool for patients, clinicians, and researchers. To develop a mobile health app to assess individual-specific meaningful societal participation in real time and to evaluate its usability. Development and usability study. General community. Persons with multiple sclerosis (PwMS) utilized the app for 7 consecutive days. In total, 72 PwMS and smartphone owners were included in the analysis (N=72). Using location tracking, the newly developed Whereabouts app generates an individual-specific timeline of societal participation activities each day, consisting of location and transportation intervals. Subsequently, this timeline is real time enriched by the user with self-reported ratings of meaningfulness and perceived strain of these societal participation activities. The app is based on the International Classification of Functioning, Disability and Health and was developed in an iterative process. Usability of the newly developed Whereabouts app was evaluated by analyzing the effectiveness, efficiency, and user satisfaction. Regarding effectiveness, the app correctly assessed the type, frequency, and duration of different societal participation activities for 96.1% of the participation activities. The self-reported ratings of societal participation varied for meaningfulness (range, 5-8), perceived strain (range, 2-6), and meaningfulness of the perceived strain (range, 5-8). The latter 2 were highly correlated (r =0.857). With regards to efficiency, 3.9% of the generated participation activities had to be excluded due to inaccuracy or incompleteness. Relating to user satisfaction, 57.3% of PwMS reported that they were satisfied with the usability of the app and 59.7% stated that it gave a realistic overview of their daily activities. However, 54.4% PwMS missed the possibility to specify activities at home, to add activities in more detail, and to correct mistakes. The Whereabouts app demonstrates usability in assessing real-time, individual-specific meaningful societal participation. Improvements are recommended, such as the possibility to specify participation activities and to generate a graphic overview. [ABSTRACT FROM AUTHOR]

Complications of intrathecal baclofen treatment (ITB) with an implanted pump can be severe and require surgery. Surgical implantation techniques and catheter materials for continuous ITB treatment have improved over the past years with the aim to reduce complications. To assess: 1) the type and rate of complications of ITB that require surgical intervention, 2) which risk factors influence the occurrence of complications, and, specifically, 3) whether complication rate is influenced by type of catheter used. A retrospective cohort study was conducted including all children (<18 years old) in one university medical center with pump implantation between 2001 and 2017. All complications requiring surgery were recorded. Risk factors for surgical intervention were determined using multiple logistic regression analysis. Catheter related complications between two types of catheters (silicone vs coated) were compared. In total, 88 complications of ITB treatment requiring surgery were found in 47 (36.2%) out of 130 children. These included catheter-related complications (55.7% of all complications), infections (21.6%), cerebrospinal fluid leakage (14.8%), and pump-related complications (7.9%). The silicone catheter type, used until 2012, was found to be a significant risk factor for complications (Odds Ratio 3.75; 95% CI: 1.30–10.83). Since the introduction of the coated catheter type, in 2012, the rate of catheter-related complications decreased, from 0.15 to 0.10 complications per pump year. The rate of surgical complications of intrathecal baclofen in children is high, and most frequently catheter-related. The number of complications decreased since the introduction of a new, coated, catheter in 2012. This study helps to inform children and their caregivers about the risk of possible complications of ITB, and to identify directions for future improvement of ITB care. • Reported complications of ITB in an almost complete cohort of 130 children over a 20-year period. • Fewer catheter-related complications with coated catheter compared to silicone catheter. • No other risk factors identified related to complications. [ABSTRACT FROM AUTHOR]

Background: Fatigue is a frequently occurring symptom of multiple sclerosis (MS) that limits social participation.Objective: To systematically determine the short and long-term effects of cognitive behavioral therapy (CBT) for the treatment of MS-related fatigue.Data Sources: Pubmed, Cochrane, EMBASE, Psychology and Behavioral Sciences Collection, ERIC, PsychINFO, Cinahl, PsycARTICLES, and relevant trial registers were searched up to February 2016. In addition, references from retrieved articles were examined.Study Selection: Studies were included if participants had MS, fatigue was a primary outcome measure, the intervention was CBT, and the design was a randomized controlled trial. The search was performed by two independent reviewers, three CBT experts determined whether interventions were CBT.Data Extraction: Data on patient and study characteristics and fatigue were systematically extracted using a standardized data extraction form. Two independent reviewers assessed risk of bias using the Cochrane Collaboration risk of bias tool. In the event of disagreement, a third reviewer was consulted.Data Synthesis: Of the 994 identified studies, 4 studies were included in the meta-analysis, comprising 193 CBT-treated patients and 210 patients who underwent a control treatment. Meta-analyses of these studies showed that CBT treatment had a positive short-term effect on fatigue (standardized mean difference [SMD]=-0.47; 95% confidence interval [CI]=-0.88; -0.06; I(2)=73%). In addition, three studies showed a long-term positive effect of CBT (SMD=-0.30; CI -0.51; -0.08; I(2)=0%).Conclusions: This review found that the use of CBT for the treatment of fatigue in patients with MS has a moderately positive short-term effect. However, this effect decreases with cessation of treatment. [ABSTRACT FROM AUTHOR]

Objective To investigate the feasibility and safety of cardiopulmonary exercise testing (CPET) in patients with multiple sclerosis (MS). Data Sources PubMed, EMBASE, CINAHL, SPORTDiscus, PsycINFO, ERIC, and the Psychology and Behavioral Sciences Collection were searched up to October 2014. References from retrieved articles were examined to identify additional relevant studies. Study Selection Inclusion of original studies was on the basis of performance of maximal CPET, description of the protocol, and participants with definite MS aged ≥18 years. No language restrictions were applied. Data Extraction The quality of CPET reporting in included studies was scored according to a structured checklist considering 10 feasibility (eg, test abnormalities) and 12 safety quality criteria (eg, adverse events). Structured data extraction was performed for these feasibility and safety features of CPET. Data Synthesis Forty-six studies were included, comprising 1483 patients with MS, with a mean age ± SD of 42.0±5.8 years and a median Expanded Disability Status Scale (EDSS) score of 2.8 (first quartile=2.1; third quartile=3.9; range of average EDSS scores, .75–5.8). Quality of reporting on CPET varied from 3 to 13 out of a possible 22 quality points. The percentage of test abnormalities (feasibility) was 10.0%, primarily because of an inability to maintain pedaling at a specific resistance. The percentage of adverse events (safety) was 2.1%. All adverse events were temporary. Conclusions Based on the available data, we conclude that CPET is feasible provided that the CPET modality is tailored to the physical abilities of the patient. Furthermore, CPET is safe when recommended precautions and safety measures are implemented. However, future optimization of CPET will require protocolized testing and the implementation of standard reporting procedures. [ABSTRACT FROM AUTHOR]

Objective To study physical behavior in detail in fatigued persons with multiple sclerosis (MS). Design Case-control explorative study. Setting Outpatient rehabilitation department and participants' daily environment. Participants Fatigued persons with MS (n=23) were selected from a randomized controlled trial. Cases were matched by age and sex to healthy, nonfatigued controls (n=23). Eligible persons with MS were severely fatigued (Checklist Individual Strength fatigue domain mean score, 43.2±6.6) and ambulatory (Expanded Disability Status Scale mean score, 2.5±1.5). Interventions Not applicable. Main Outcome Measures Measurements were performed using an accelerometer over 7 days. Outcomes included the following: amount of physical activity expressed in counts per day, counts per minute (CPM), and counts per day period (morning, afternoon, evening); duration of activity intensity categories (sedentary, light physical activity, moderate-to-vigorous physical activity [MVPA]); and distribution of MVPA and sedentary periods over the day. Results Persons with MS had fewer counts per day (mean difference, −156×10 3 ; 95% confidence interval [CI], −273×10 3 to −39×10 3 ; P =.010), had fewer CPM (mean difference, −135; 95% CI, −256 to −14; P =.030), and were less physically active in the morning (mean difference, −200; 95% CI, −389 to −11; P =.039) and evening (mean difference, −175; 95% CI, −336 to −14; P =.034) than controls. Persons with MS spent a higher percentage of their time sedentary (mean difference, 5.6; 95% CI, .1–11.1; P =.045) and spent less time at the higher MVPA intensity (mean difference, −2.4; 95% CI, −4.7 to −0.09; P =.042). They had fewer MVPA periods (mean difference, 29; 95% CI, −56.2 to −2.6; P =.032) and a different distribution of sedentary (mean difference, .033; 95% CI, .002 to .064; P =.039) and MVPA periods (mean difference, −.08; 95% CI, −.15 to −.01; P =.023). Conclusions Detailed analyses of physical behavior showed that ambulatory fatigued persons with MS do differ from healthy controls not only in physical activity level, but also in other physical behavior dimensions (eg, day patterns, intensity, distribution). [ABSTRACT FROM AUTHOR]

Abstract: Kempen JCE, de Groot V, Knol DL, Lankhorst GJ, Beckerman H. Self-reported fatigue and energy cost during walking are not related in patients with multiple sclerosis. Objectives: To determine whether there is a relationship between self-reported fatigue and the energy cost of walking (ECw), and how self-reported fatigue and ECw relate to physical functioning in patients with multiple sclerosis (MS). Design: Cross-sectional cohort study, using structural equation modeling. Setting: Home environment and at a university medical center. Participants: Patients (N=75) were obtained from a longitudinal study on outcome measurement and functional prognosis in early MS. Patients were included if they were able to walk for 6 minutes without being assisted by a person. The age range was between 28.0 and 69.7 years and the median Expanded Disability Status Scale was 2.5 (range, 1.0–6.5). Interventions: Not applicable. Main Outcome Measures: Self-reported fatigue was measured with the Fatigue Severity Scale, the vitality subscale of the Medical Outcomes Study 36-Item Short-Form Health Survey (SF-36), and a visual analog scale. Physical functioning was determined with the physical functioning subscale of the SF-36, fast walking speed, and comfortable walking speed. The ECw (J·kg−1·m−1) was measured with the energy cost of the walking test. Results: The relationship between ECw and latent variable fatigue had a β=−.188 (P=.236), that between ECw and physical functioning (SF-36 physical functioning) had a β=−.344 (P=.001), and that between fatigue and physical functioning had a β=−.448 (P=.000). Conclusions: Fatigue and ECw are not related in patients with MS with mild to moderate walking problems. ECw and fatigue are independent determinants of physical functioning. [Copyright &y& Elsevier]

Abstract: Background: Children with an obstetric brachial plexus injury (OBPI) can experience problems in the performance of meaningful activities such as writing, bimanual activities, and participation in sports and leisure activities. Aims: To quantify the everyday functioning and participation of 7–8 year-old children with an OBPI, with special emphasis on writing, and to investigate associated characteristics. Methods: Parents of children with an OBPI were sent a self-report questionnaire regarding the school performance, writing abilities, bimanual hand use, and participation in sports and leisure activities of their child, assessed with the Vineland Adaptive Behavior Scales (VABS sub-scale writing), the ABILHAND-kids, and the Children’s Assessment of Participation and Enjoyment (CAPE). Furthermore, questions were asked about socio-demographic variables, medical history, pain, and the use of assistive devices. Results: Fifty three questionnaires were filled in (response 61%). According to the parents, 66% of their children were almost completely recovered, and 58% had a near normal arm function. Most of the children preferred to use their non-involved hand. More than 45% of the children complained about pain, and 39.6% had difficulties with writing, which resulted in a mean developmental delay of 8 months on the VABS sub-scale. Children with writing problems significantly more often had neurosurgery, were living with a single parent, more often received assistance at school, and had a significantly lower ABILHAND-kids score, compared to children with no writing problems. Conclusions: Large percentages of 7–8 year-old children with an OBPI experience difficulties with writing and have musculoskeletal pain. Restrictions in participation were less pronounced. [Copyright &y& Elsevier]

Abstract: de Groot V, Beckerman H, Uitdehaag BM, Hintzen RQ, Minneboo A, Heymans MW, Lankhorst GJ, Polman CH, Bouter LM, on behalf of the Functional Prognostication and Disability (FuPro) Study Group. Physical and cognitive functioning after 3 years can be predicted using information from the diagnostic process in recently diagnosed multiple sclerosis. Objective: To predict functioning after 3 years in patients with recently diagnosed multiple sclerosis (MS). Design: Inception cohort with 3 years of follow-up. At baseline, predictors were obtained from medical history taking, neurologic examination, and magnetic resonance imaging (MRI). Setting: Neurology outpatient clinic. Participants: Patients with MS (N=156); 146 with complete follow-up. Interventions: Not applicable. Main Outcome Measures: Inability to walk at least 500m, impaired dexterity, cognitive impairments, incontinence, inability to drive a car or use public transportation, social dysfunction, and reliance on a disability pension. Results: Clinical prediction rules were constructed for the models that were well calibrated (sufficient agreement between predicted and observed outcomes, based on visual inspection of calibration curves) and that showed sufficient discrimination (area under the receiver operation characteristic curve >.70) after internal bootstrap validation. The models for the inability to walk at least 500m, impaired dexterity, and cognitive impairments were well calibrated. Discrimination was sufficient for all 7 models, except the one predicting social dysfunction (.67). The inability to walk at least 500m was predicted by the perceived ability to walk, impairment of the cerebellar tract, and the number of MRI lesions in the spinal cord. Impaired dexterity was predicted by the perceived ability to use the hands, impairments of the pyramidal, cerebellar, and sensory tracts, and the T2-weighted infratentorial lesion load. Cognitive impairment was predicted by age, gender, the perceived ability to concentrate, and the T2-weighted supratentorial lesion load. Conclusions: Inability to walk at least 500m, impaired dexterity, and cognitive impairments can be predicted with predictors that are derived from medical history taking, neurologic examination, and MRI shortly after a definite diagnosis of MS has been made. [Copyright &y& Elsevier]

The object of this article was to systematically review available methods to measure comorbidity and to assess their validity and reliability. A search was made in Medline and Embase, with the keywords comorbidity and multi-morbidity, to identify articles in which a method to measure comorbidity was described. The references of these articles were also checked, and using a standardized checklist the relevant data were extracted from these articles. An assessment was made of the content, concurrent, predictive and construct validity, and the reliability. Thirteen different methods to measure comorbidity were identified: one disease count and 12 indexes. Data on content and predictive validity were available for all measures, while data on construct validity were available for nine methods, data on concurrent validity, and interrater reliability for eight methods, and data on intrarater reliability for three methods. The Charlson Index is the most extensively studied comorbidity index for predicting mortality. The Cumulative Illness Rating Scale (CIRS) addresses all relevant body systems without using specific diagnoses. The Index of Coexisting Disease (ICED) has a two-dimensional structure, measuring disease severity and disability, which can be useful when mortality and disability are the outcomes of interest. The Kaplan Index was specifically developed for use in diabetes research. The Charlson Index, the CIRS, the ICED and the Kaplan Index are valid and reliable methods to measure comorbidity that can be used in clinical research. For the other indexes, insufficient data on the clinimetric properties are available. [Copyright &y& Elsevier]

• Life balance inventory assesses congruence between desired and actual time spent in relevant activities. • LBI was translated and back-translated in different European subsamples. • Limited support for test-retest reliability and construct validity of the LBI. • Although useful in goalsetting,to use LBI in (international) research, further research is warranted. Life balance is defined as "a satisfying pattern of daily activity that is healthful, meaningful, and sustainable to an individual within the context of his or her current life circumstances". To assess life balance, the self-report instrument Life Balance Inventory (LBI) has been developed in the US. The aim of this study was to evaluate cross-cultural, construct validity and test-retest reliability of translated versions of the LBI in people with multiple sclerosis (MS) within different European cultures (Dutch, Flemish, Slovenian, and Spanish). The LBI was translated according to the principles of forward/backward translation and the cultural adaption process of patient-reported outcomes and evaluated in people with MS in each country/language area. LBI (score range 1–3; higher scores refer to better balance) was registered twice with an interval of 7 days to evaluate test-retest reliability using Intraclass Correlation Coefficients (ICCs) and Bland Altman analyses. To evaluate construct validity, Pearson correlations of the LBI with quality of life, fatigue, depression and self-efficacy were explored. The total sample (n = 313, 50 ± 11 years of age, MS duration 13 ± 8 years) consisted of five subsamples: Dutch (n = 81, 74% women, 54 ± 9.6 years of age), Flemish 1 (n = 42, 57% women, 49 ± 12 years), Flemish 2 (n = 105, 63% women, 50 ± 10.6 years), Slovenian (n = 48, 79% women, 44 ± 11.2 years) and Spanish (n = 37, 62% women, 47 ± 9.0 years). Baseline total LBI scores differed between subsamples (F (4, 312)=7.19, p < 0.001). ICC [95% CI] of total LBI was 0.88 [0.83–0.92] (Flemish 2), 0.65 [0.39–0.82] (Flemish 1), 0.55 [0.37–0.69] (Dutch), 0.45 [0.15–0.67] (Spanish) and 0.35 [0.07–0.59] (Slovenian). Systematic error was present in one sample; no proportional bias occurred. Correlations ranged from 0.05 to 0.55 for quality of life and self-efficacy, from −0.50 to 0.05 for fatigue and from −0.44 to −0.28 for depression, not fully supporting the hypotheses. The study results provide limited support for test-retest reliability, cross-cultural and construct validity of the LBI in different European subsamples. Although LBI may serve as a supportive tool in goalsetting in rehabilitation, the current version of LBI is not recommended for (international) research purposes. [ABSTRACT FROM AUTHOR]

This study aimed to examine muscle fatigue in lower leg muscles in of people with multiple sclerosis and healthy controls, and whether muscle fatigue coincided with potential changes in gait. In this case-control study, people with multiple sclerosis (n = 8; 3male; mean age (SD) = 49.7 (9.6) yr) and age-matched healthy controls (n = 10; 4male; mean age (SD) = 47.4 (8.7) yr) walked on a treadmill for 12-min at self-paced speed. Muscle fatigue was indirectly quantified by a decrease in median frequency and increase in root mean square of surface electromyographic recordings of lower leg muscles. Walking speed, ankle push-off power and net ankle work were calculated from marker positions and force plate data using inverse dynamic calculations. People with multiple sclerosis showed larger decreases in median frequency of soleus (most affected leg: p = 0.003; least affected leg: p = 0.009) and larger increases in root mean square of soleus (most and least affected leg: p = 0.037), gastrocnemius medialis (most affected leg: p = 0.003; least affected leg: p = 0.005) and lateralis (most and least affected leg: p < 0.001) compared to controls. Walking speed (p = 0.001), ankle push-off power (most affected leg: p = 0.018; least affected leg: p = 0.001) and net work around the ankle (most affected leg: p = 0.046; least affected leg: p = 0.001) were lower in people with multiple sclerosis compared to controls, but increased in both groups. The results yield preliminary evidence that soleus muscles of people with multiple sclerosis fatigue during prolonged walking. Changes in electromyography of gastrocnemius muscles could however be related to muscle fatigue, changes in gait or a combination. • Muscle fatigue was predominantly present in soleus muscles of people with multiple sclerosis. • No concurrent declines in walking performance were observed. • Preliminary evidence that muscle fatigue may contribute to walking-related fatigue. [ABSTRACT FROM AUTHOR]

Abstract Background Patients with multiple sclerosis (pwMS) often experience a decline in motor function and performance during prolonged walking, which potentially is associated with reduced ankle push-off power and might be alleviated through structured exercise. The objectives of this pilot study were to assess ankle push-off power and walking performance in pwMS and healthy controls, and the preliminary effectiveness of a sequential exercise program (resistance training followed by walking-specific endurance training) on ankle push-off power and walking performance. Methods PwMS (N = 10) with self-reported reduced walking performance and healthy controls (N = 10; at baseline only) underwent 3D gait analysis during a self-paced 12-minute walking test to assess walking performance prior to and following a sequential exercise program. Secondary testing paradigms comprised isometric muscle testing (triceps surae), cardiopulmonary exercise testing and self-report measures. Findings PwMS had a shorter 12-minute walking distance, and lower peak ankle push-off power (most-affected leg) in comparison to healthy controls. There was no minute-to-minute decline in walking performance. The 8-week resistance training significantly improved walking distance. In parallel, higher peak and speed-normalized ankle push-off power were found in the less-affected side. No additional changes were found following the walking-specific endurance training phase. Interpretation There was no walking-related motor fatigue found during a self-paced 12-minute walking test despite reduced ankle push-off power, and self-reported walking problems. Preliminary effects suggest a positive effect of resistance training on walking performance, potentially associated with increases in ankle push-off power, interestingly, in the less-affected leg. The added effect of the walking-specific endurance training remains unclear. Highlights • Positive preliminary effect of resistance training on walking performance • Patients with Multiple Sclerosis had a shorter walking distance, and lower ankle push-off power • Added effect of the walking-specific endurance training unclear • Potentially more profound changes in ankle push-off in the less-affected side • Both the fast-paced 6-minute and self-paced 12-minute walking test may lack construct validity [ABSTRACT FROM AUTHOR]