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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 purpose of this study was to describe the physical activity level of adolescents with cerebral palsy (CP) and to investigate the associated factors. The physical activity level was measured by means of a questionnaire filled in by the parents of 72 adolescents with CP (12-16 years of age) and expressed in METs. Older age, female gender, and hip dysplasia were significantly associated with a lower level of physical activity. Eighty-nine percent were not physically active enough according to the Dutch norm. Physical activity needs to be promoted, especially among older adolescents with CP (age 14-16 years), girls, and adolescents with hip dysplasia. [ABSTRACT FROM AUTHOR]

Background: Fatigue is a common symptom in multiple sclerosis (MS) and often restricts societal participation. Cognitive behavioral therapy (CBT) may alleviate MS-related fatigue, but evidence in literature is inconclusive. Objective: To evaluate the effectiveness of CBT to improve MS-related fatigue and participation. Methods: In a multi-center, assessor-masked, randomized controlled trial, participants with severe MSrelated fatigue were assigned to CBT or control treatment. CBT consisted of 12 individual sessions with a psychologist trained in CBT, the control treatment consisted of three consultations with a MS nurse, both delivered over 16 weeks. Assessments were at baseline, 8, 16 (i.e. post-intervention), 26, and 52 weeks post-baseline. Primary outcomes were the Checklist Individual Strength-fatigue subscale (CIS20r fatigue) and the Impact on Participation and Autonomy questionnaire (IPA). Data were analyzed according to the intention-to-treat principle, using mixed-model analysis. Results: Between 2011 and 2014, 91 patients were randomized (CBT: n = 44; control: n = 47). Betweengroup analysis showed a positive post-intervention effect for CBT on CIS20r fatigue (T16: -6.7 (95% confidence interval (CI) = -10.7; -2.7) points) that diminished during follow-up (T52: 0.5 (95% CI = -3.6; 4.4)). No clinically relevant effects were found on societal participation. Conclusion: Severe MS-related fatigue can be reduced effectively with CBT in the short term. More research is needed on how to maintain this effect over the long term. [ABSTRACT FROM AUTHOR]

Background: Evidence supporting the effectiveness of aerobic training, specific for fatigue, in severely fatigued patients with multiple sclerosis (MS) is lacking. Objective: To estimate the effectiveness of aerobic training on MS-related fatigue and societal participation in ambulant patients with severe MS-related fatigue. Methods: Patients (N = 90) with severe MS-related fatigue were allocated to 16-week aerobic training or control intervention. Primary outcomes were perceived fatigue (Checklist Individual Strength (CIS20r) fatigue subscale) and societal participation. An improvement of ⩾8 points on the CIS20r fatigue subscale was considered clinically relevant. Outcomes were assessed by a blinded observer at baseline, 2, 4, 6 and 12 months. Results: Of the 89 patients that started treatment (median Expanded Disability Status Scale (interquartile range), 3.0 (2.0-3.6); mean CIS20r fatigue subscale (standard deviation (SD)), 42.6 (8.0)), 43 received aerobic training and 46 received the control intervention. A significant post-intervention between-group mean difference (MD) on the CIS20r fatigue subscale of 4.708 (95% confidence interval (CI) = 1.003-8.412; p = 0.014) points was found in favour of aerobic training that, however, was not sustained during follow-up. No effect was found on societal participation. Conclusion: Aerobic training in MS patients with severe fatigue does not lead to a clinically meaningful reduction in fatigue or societal participation when compared to a low-intensity control intervention. [ABSTRACT FROM AUTHOR]

Background: Fatigue is a frequently reported and disabling symptom in multiple sclerosis (MS). Objective: To investigate the effectiveness of an individual energy conservation management (ECM) intervention on fatigue and participation in persons with primary MS-related fatigue. Methods: A total of 86 severely fatigued and ambulatory adults with a definite diagnosis of MS were randomized in a single-blind, two-parallel-arm randomized clinical trial to the ECM group or the information-only control group in outpatient rehabilitation departments. Blinded assessments were carried out at baseline and at 8, 16, 26 and 52 weeks after randomization. Primary outcomes were fatigue (fatigue subscale of Checklist Individual Strength - CIS20r) and participation (Impact on Participation and Autonomy scale - IPA). Results: Modified intention-to-treat analysis was based on 76 randomized patients (ECM, n = 36; MS nurse, n=40). No significant ECM effects were found for fatigue (overall difference CIS20r between the groups = -0.81; 95% confidence interval (CI), -3.71 to 2.11) or for four out of five IPA domains. An overall unfavourable effect was found in the ECM group for the IPA domain social relations (difference between the groups = 0.19; 95% CI, 0.03 to 0.35). Conclusion: The individual ECM format used in this study did not reduce MS-related fatigue and restrictions in participation more than an information-only control condition. [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.

Purpose: To study the influence of obstetric brachial plexus lesion (OBPL) on arm-hand function and daily functioning in adults, and to investigate the relationship of arm-hand function and pain to daily functioning. Method: Adults with unilateral OBPL who consulted the brachial plexus team at the VU University Medical Center in the past were invited to participate. Daily functioning was measured with the Disability of the Arm, Shoulder and Hand (DASH) questionnaire and the SF36, pain with VAS Pain Scales and arm-hand function with the Nine Hole Peg Test (9-HP-test) and the Action Research Arm Test (ARAT). Scores of the affected arm were compared to those of the non-affected arm or norm values for healthy controls. Results: Twenty-seven persons (mean age 22, SD 4.2 years), of whom 10 men, participated. The ARAT and 9-HP-test scores for the affected arm were significantly worse than those for the non-affected arm. Moderate to severe pain in the affected arm, the non-affected arm or the back was reported by 50% of the participants. The DASH general, sports/music and SF36 physical functioning scores were significantly worse than norm values. The ARAT/9-HP-test and daily functioning showed little association. Low to moderate associations were found between pain and daily functioning. Conclusions: Many young adults with OBPL experience limitations in daily functioning. Pain, rather than arm-hand function, seems to explain these limitations. [ABSTRACT FROM AUTHOR]