Quality of instruments assessing activity and participation of people with muscular dystrophy: A systematic review of participant-reported outcome measures.

AIM: To identify the standardized assessment scales for people with muscular dystrophy and investigate the quality/level of evidence of their measurement properties. METHOD: A systematic review of patient-reported outcome measures was conducted on the MEDLINE, Embase, AMED, DiTA, and PsycINFO databases in August 2020. We included psychometric studies that investigated the validity, reliability, and responsiveness of instruments assessing activity and participation for muscular dystrophy of any type (Duchenne, Becker, limb-girdle, facioscapulohumeral, congenital, and myotonic) or age. Two independent reviewers selected the studies, extracted data, and evaluated the instruments' quality and level of evidence following the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist. The study followed the Preferred Reporting Items for Systematic reviews and Meta-Analysis (PRISMA) 2020 guidelines. RESULTS: The searches identified 6675 references; a total of 46 studies with 28 condition-specific or general instruments were included. The measurement properties of most instruments had sufficient (68.8%) or indeterminate (25.7%) results according to COSMIN. The quality of evidence of the measurement properties was moderate (23.8%) or low (22.6%) according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE). INTERPRETATION: There is a lack of high-quality instruments whose psychometric properties are adequately measured. The highest quality instrument is the Muscular Dystrophy Functional Rating Scale. The Motor Function Measure (general instrument), Duchenne Muscular Dystrophy Upper-limb Patient-reported Outcome Measure, North Star Ambulatory Assessment, and Myotonic Dystrophy Type 1 Activity and Participation Scale for Clinical Use (specific) are also recommended. WHAT THIS PAPER ADDS: There are 28 available instruments for activity and participation of people with muscular dystrophy. The evidence quality is moderate or low because of imprecision and indirectness. The Muscular Dystrophy Functional Rating Scale is the highest quality instrument. The Motor Function Measure is the second most recommended instrument. The Duchenne Muscular Dystrophy Upper-limb Patient-reported Outcome Measure, North Star Ambulatory Assessment, and Myotonic Dystrophy Type 1 Activity and Participation Scale for Clinical Use are also recommended.

Analysis of Informative Content on Cerebral Palsy Presented in Brazilian-Portuguese YouTube Videos.

Aims: To describe the characteristics of the most accessed YouTube videos in Brazilian-Portuguese on cerebral palsy (CP), and to analyze content of informational videos about this topic.Methods: This was a cross-sectional study. Searching on YouTube website was conducted by two independent examiners between November and December 2019, using the keywords "Paralisia Cerebral" sorted by videos' number of views. Videos that did not present content related to CP or duplicate videos were excluded. The interaction parameters and content characteristics of the included videos were extracted. To access the trustworthiness and quality of informational videos, the modified Discern checklist and the Global Quality Score was used.Results: Following the eligibility criteria 90 videos were included. Fifty-three (53) were classified as experiential videos and 37 as informational videos. Informational videos presented multi-topics about different aspects of CP. This group of videos presented moderate trustworthiness due to the lack of scientific evidence content. Informational videos had good quality and generally good flow.Conclusion: YouTube presented a large number of videos about CP in Brazilian-Portuguese. Informational videos are useful for patients and healthcare providers; however, it is necessary to included information about scientific evidence, as a strategy to facilitate and promote knowledge translation.

Qualidade dos instrumentos que avaliam Atividade e Participação de pessoas com distrofia muscular: uma revisão sistemática de medidas de resultado relatadas pelos pacientes.

OBJETIVO: Identificar os instrumentos de avaliação para pessoas com distrofia muscular e investigar a qualidade/nível de evidência de suas propriedades de medidas. MÉTODOS: Uma revisão sistemática de medidas de resultado relatadas pelos pacientes foi conduzida nas bases de dados MEDLINE, Embase, AMED, DiTA e PsycINFO em agosto de 2020. Foram incluídos estudos psicométricos que investigaram a validade, confiabilidade e responsividade de instrumentos de medida que avaliam atividade e participação para distrofia muscular de qualquer tipo (Duchenne, becker, cinturas, facioescapuloumeral, congênita e miotônica) e idade. Dois revisores independentes selecionaram os estudos, extraíram dados e avaliaram a qualidade e nível de evidência dos instrumentos de medida seguindo o checklist COnsensus-based Standards for the Selection of health status Measurement INstruments (COSMIN). RESULTADOS: A busca identificou 6675 referências; um total de 46 estudos com 28 instrumentos de medida de condição-específica ou genéricos foram incluídos. As propriedades de medidas da maioria dos instrumentos tiveram resultados suficientes (68.8%) ou indeterminados (25.7%) de acordo com o COSMIN. A qualidade da evidência das propriedades de medidas foi moderada (23.8%) ou baixa (22.6%) de acordo com o Grading of Recommendations Assessment, Development, and Evaluation (GRADE). INTERPRETAÇÃO: Existem poucos instrumentos de medida de alta qualidade que tiveram suas propriedades adequadamente medidas. O instrumento com maior qualidade é o Muscular Dystrophy Functional Rating Scale. O Motor Function Measure (instrumento genérico), Duchenne Muscular Dystrophy Upper-limb Patient-reported Outcome Measure, North Star Ambulatory Assessment e Myotonic Dystrophy Type 1 Activity and Participation Scale for Clinical Use (específicos) também são recomendados.

Efficacy of Whole-Body Vibration Training on Brain-Derived Neurotrophic Factor, Clinical and Functional Outcomes, and Quality of Life in Women with Fibromyalgia Syndrome: A Randomized Controlled Trial.

This study aimed to investigate the efficacy of whole-body vibration training (WBVT) on blood brain-derived neurotrophic factor (BDNF) levels and determine the clinical and functional outcomes in patients with fibromyalgia syndrome (FMS). Thirty-two women with FMS were randomized into an intervention group (IG), receiving 6 weeks of WBVT, or a control group (CG) with no intervention. The outcomes at the baseline and follow-up in both groups included blood BDNF levels, sit-to-stand test (STS), 6-minute walk test (6MWT), Fibromyalgia Impact Questionnaire (FIQ), Pittsburgh Sleep Quality Index (PSQI), Beck Depression Inventory (BDI), and visual analogue scale (VAS). WBVT resulted in a group-by-time interaction effect. Thus, after the intervention time, the IG had increased blood BDNF levels (p=0.045), a higher number of repetitions on the STS test (p=0.011), and increased walking distance on the 6MWT (p=0.010), compared to CG. Moreover, there was a reduction in the scores of the FIQ (p=0.001), the PSQI (p=0.001), the BDI (p=0.017), and pain assessed using VAS (p=0.008) in IG. The results demonstrate that WBVT promotes an increase in blood BDNF levels, with concomitant improvement in lower limb muscle strength, aerobic capacity, clinical symptoms, and quality of life in women with FMS. This trial is registered with Brazilian Clinical Trials Registry (REBEC; RBR-38nbbx) (https://ensaiosclinicos.gov.br/rg/RBR-38nbbx).

Whole-Body Vibration Exercise in Different Postures on Handgrip Strength in Healthy Women: A Cross-Over Study.

OBJECTIVE: To compare the effect of Whole-Body Vibration Exercise (WBVE) applied in push-up modified and half-squat positions, on handgrip strength (HS) and on the electromyography registry (EMGrms) of the flexor digitorum superficialis muscle (FDSM) of the dominant hand. METHODS: Nineteen healthy women (age 23.40 ± 4.03 years, bodyweight: 58.89 ± 9.87 kg), performed in a randomized order five different tests: (S1) Control; (S2) Push-up modified; (S3) Push-up placebo; (S4); Half-squatting; (S5) Half-squatting placebo. The HS and the EMGrms were assessed at baseline and immediately after the tests. ANOVA two-way design mixed test, with Tukey post hoc, was used to evaluate the HS, EMGrms and the ratio between EMGrms and HS, i.e., neural ratio (NR). Thus, the lower NR represents the greater neuromuscular modifications. The statistical significance level was set up at p < 0.05. RESULTS: WBVE on S2 increased HS compared to the stimulus applied to the S4 (p = 0.0001). The increase in HS was associated with a reduction in the EMGrms of the FDSM (p < 0.001) and a lower NR (p < 0.0001), i.e., greater neuromuscular modifications, in the S2 compared to the S4 after the tests. CONCLUSION: The distance of the stimulus and the positioning on the vibratory platform influence the maximum muscular strength due to neuromuscular modifications of hands in healthy women.