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Aim: To investigate spoken language comprehension (SLC), single‐word comprehension (SWC), functional communication development, and their determinants, in children with cerebral palsy. Method: This was a prospective cohort study in the Netherlands spanning 2 years 6 months. The main outcomes were SLC and SWC, assessed by the Computer‐Based instrument for Low motor Language Testing (C‐BiLLT) and the Peabody Picture Vocabulary Test‐III‐NL (PPVT‐III‐NL) respectively; and functional communication, measured by a subscale of the Focus on the Outcomes of Communication Under Six‐34 (FOCUS‐34). Linear mixed models were used to determine developmental trajectories, which were compared with norm and reference data. Potential determinants, for example intellectual functions, speech production, functional communication level (classified with the Communication Function Classification System, CFCS), and functional mobility, were added to assess their effects. Results: Children with cerebral palsy (n = 188; mean age 59 months, range 17–110) were monitored for 2 years 6 months. Developmental trajectories for SLC (C‐BiLLT) and SWC (PPVT‐III‐NL) were nonlinear; those for functional communication (FOCUS‐34) were linear. Compared with norm and reference groups, significantly delayed SLC, SWC, and functional communication development were found. Determinants for SLC and SWC were intellectual functions and functional communication level (CFCS); and for functional communication development (FOCUS‐34), speech production and arm–hand functioning. Interpretation: Children with cerebral palsy showed delayed SLC, SWC, and functional communication development compared with norm and reference groups. Remarkably, functional mobility was not associated with the development of SLC, SWC, or functional communication. What this paper adds: Children with cerebral palsy have delayed spoken language comprehension (SLC), single‐word comprehension (SWC), and functional communication development, compared to norm and reference data.Determinants for SLC and SWC development are intellectual functions and functional communication level.Determinants for functional communication development are speech production and arm–hand functioning.Functional mobility is not associated with SLC, SWC, or functional communication. What this paper adds: Children with cerebral palsy have delayed spoken language comprehension (SLC), single‐word comprehension (SWC), and functional communication development, compared to norm and reference data.Determinants for SLC and SWC development are intellectual functions and functional communication level.Determinants for functional communication development are speech production and arm–hand functioning.Functional mobility is not associated with SLC, SWC, or functional communication. Video Podcast: https://youtu.be/x09Tac7tsz0 [ABSTRACT FROM AUTHOR]

To determine the relationship between appraisal and societal participation in fatigued patients with Multiple Sclerosis (MS), and whether this relation is mediated by coping styles. 265 severely-fatigued MS patients. Appraisal, a latent construct, was created from the General Self-Efficacy Scale and the helplessness and acceptance subscales of the Illness Cognition Questionnaire. Coping styles were assessed using the Coping Inventory Stressful Situations (CISS21) and societal participation was assessed using the Impact on Participation and Autonomy. A multiple mediator model was developed and tested by structural equation modeling on cross-sectional data. We corrected for confounding by disease-related factors. Mediation was determined using a product-of-coefficients approach. A significant relationship existed between appraisal and participation ([beta] = 0.21, 95 % CI 0.04-0.39). The pathways via coping styles were not significant. In patients with severe MS-related fatigue, appraisal and societal participation show a positive relationship that is not mediated by coping styles., Author(s): Lizanne Eva van den Akker[sup.1] [sup.2] [sup.3] , Heleen Beckerman[sup.1] [sup.2] [sup.3] , Emma Hubertine Collette[sup.4] , Gijs Bleijenberg[sup.5] , Joost Dekker[sup.1] [sup.2] , Hans Knoop[sup.5] , Vincent de [...]

Abstract Changes in scores on health status questionnaires are difficult to interpret. Several methods to determine minimally important changes (MICs) have been proposed which can broadly be divided in distribution-based and anchor-based methods. Comparisons of these methods have led to insight into essential differences between these approaches. Some authors have tried to come to a uniform measure for the MIC, such as 0.5 standard deviation and the value of one standard error of measurement (SEM). Others have emphasized the diversity of MIC values, depending on the type of anchor, the definition of minimal importance on the anchor, and characteristics of the disease under study. A closer look makes clear that some distribution-based methods have been merely focused on minimally detectable changes. For assessing minimally important changes, anchor-based methods are preferred, as they include a definition of what is minimally important. Acknowledging the distinction between minimally detectable and minimally important changes is useful, not only to avoid confusion among MIC methods, but also to gain information on two important benchmarks on the scale of a health status measurement instrument. Appreciating the distinction, it becomes possible to judge whether the minimally detectable change of a measurement instrument is sufficiently small to detect minimally important changes.

Background: Patient autonomy is a bioethical principle that was strengthened in the revised Declaration of Geneva. Shared decision making (SDM) is particularly relevant in the management of multiple sclerosis (MS) because many preference-sensitive decisions have to be made during the disease course. We aimed to summarize the available evidence on SDM in the MS field and to inform future research and practice. Methods: We performed a scoping review by searching MEDLINE (past 5 years). Studies were included if they reported primary/secondary research and focused on SDM related to people with MS. Data were grouped into topics, with results presented in narrative form. Results: From 865 references, we included 55 studies conducted mostly in Europe. Half of the studies were observational, followed by qualitative (20%), mixed-methods (17%), randomized controlled trials (RCTs, 5%), quasi-experimental (5%), and reviews (4%). Most studies addressed people with relapsing-remitting MS (85%); the remaining addressed health care professionals, patients' significant others, or a combination. We identified five main topics: decisions on disease-modifying drugs, decisions on chronic cerebrospinal venous insufficiency treatment, information provision and patient education, health literacy, and risk knowledge. Conclusions: The high proportion of included studies on SDM in MS in Europe suggests an earlier adoption of these concepts in this area. Decisions on disease-modifying drugs was the prevalent topic. Only 5% of studies were RCTs, indicating that more research is needed to study the effectiveness of SDM interventions. Studies addressing people with primary and secondary progressive MS are also needed. [ABSTRACT FROM AUTHOR]

With the current rate in growth of evidence in multiple sclerosis (MS) rehabilitation, systematic reviews and clinical guidelines typically lag behind the most currently published research findings. In addition, most health care professionals lack the time, resources, or adequate skills to identify and evaluate new evidence, and hands-on tools to implement the latest evidence into clinical practice are often lacking or not readily available. The Applying Evidence with Confidence (APPECO) platform is a newly developed online tool that addresses these key challenges. APPECO was initiated as a proof-of-concept for the common MS symptoms fatigue and cognitive function. Subsequently, intervention studies about depression, pain, and mobility were added. APPECO currently hosts detailed information from 250 randomized clinical trials, 293 interventions, and 1250 effect sizes on 53 patient outcomes. Few studies with high quality (ie, low risk of bias) are available specifically designed to test the benefits of MS rehabilitation on fatigue (n = 5 [2.4%]), cognitive function (n = 4 [1.6%]), and depression (n = 2 [0.8%]). No high-quality studies were included for pain and mobility. APPECO has the potential to address key challenges in evidence-based rehabilitation medicine for MS and to facilitate swift knowledge translation from evidence into clinical practice. Sustainability of APPECO depends on a continuous resource impulse (eg, financial, time, editorial management, platform maintenance) to ensure up-to-date information across all relevant MS symptoms and activity limitations (≈2-6 randomized controlled trials per month). Ways to optimize knowledge translation in the absence of high-quality evidence in APPECO need to be explored further. [ABSTRACT FROM AUTHOR]

The article discusses a study that determined the relationship between appraisal and societal participation in fatigued patients with Multiple Sclerosis (MS) and whether this relation is mediated by coping styles. Topics include the creation of General Self-Efficacy Scale, the Illiness Cognition Questionnaire and the Coping Inventory Stressful Situations (CISS21). Also mentioned are appraisal and societal participation in patients with severe MS-realted fatigue showing a positive relationship.

Background: TREFAMS is an acronym for TReating FAtigue in Multiple Sclerosis, while ACE refers to the rehabilitation treatment methods under study, that is, Aerobic training, Cognitive behavioural therapy, and Energy conservation management. The TREFAMS-ACE research programme consists of four studies and has two main objectives: (1) to assess the effectiveness of three different rehabilitation treatment strategies in reducing fatigue and improving societal participation in patients with MS; and (2) to study the neurobiological mechanisms of action that underlie treatment effects and MS-related fatigue in general.Methods/design: Ambulatory patients (n = 270) suffering from MS-related fatigue will be recruited to three single-blinded randomised clinical trials (RCTs). In each RCT, 90 patients will be randomly allocated to the trial-specific intervention or to a low-intensity intervention that is the same for all RCTs. This low-intensity intervention consists of three individual consultations with a specialised MS-nurse. The trial-specific interventions are Aerobic Training, Cognitive Behavioural Therapy, and Energy Conservation Management. These interventions consist of 12 individual therapist-supervised sessions with additional intervention-specific home exercises. The therapy period lasts 16 weeks. All RCTs have the same design and the same primary outcome measures: fatigue - measured with the Checklist Individual Strength, and participation - measured with the Impact on Participation and Autonomy questionnaire. Outcomes will be assessed 1 week prior to, and at 0, 8, 16, 26 and 52 weeks after randomisation. The assessors will be blinded to allocation. Pro- and anti-inflammatory cytokines in serum, salivary cortisol, physical fitness, physical activity, coping, self-efficacy, illness cognitions and other determinants will be longitudinally measured in order to study the neurobiological mechanisms of action.Discussion: The TREFAMS-ACE programme is unique in its aim to assess the effectiveness of three rehabilitation treatments. The programme will provide important insights regarding the most effective treatment for MS-related fatigue and the mechanisms that underlie treatment response. A major strength of the programme is that the design involves three almost identical RCTs, enabling a close comparison of the treatment strategies and a strong overall meta-analysis. The results will also support clinical practice guidelines for the treatment of MS-related fatigue.Trial Registrations: Current Controlled Trials ISRCTN69520623, ISRCTN58583714, and ISRCTN82353628. [ABSTRACT FROM AUTHOR]