Duchenne Muscular Dystrophy - Physiotherapy

Peeters, Louis; Kingma, Irene E.; Dieën, Jaap H. van; Groot, I. de

doi:10.1016/j.nmd.2018.06.368

Cited by 1 publication

(4 citation statements)

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“…Consequently, it takes longer to administer (around 15mins); however, when compared to the application time of other instruments with similar characteristics, its application time is relatively fast. 44,54,57,58,63 The PUL was originally designed to assess patients with DMD but it is also used to assess patients with SMA. 44 Unlike these previous instruments, the MFM scale, created in 2005, does not exclusively assess upper-limb function; 63 rather, its constructs assess global motor function.…”

Section: Discussionmentioning

confidence: 99%

“…The studies included in the review are shown in Table S1 (online supporting information). Of these, 16 studies applied the Brooke Upper Extremity Scale to assess the upper-limb function of patients with NMDs, 19,[26][27][28][29][30][31][32][33][34][35][36][37][38][39]58 12 used the Performance of Upper Limb (PUL) measure, 19,33,36,[38][39][40][41][42][43][44][45][46] and seven used dimension 3 of the Motor Function Measure (MFM) scale. 26,30,32,35,[47][48][49] Three studies used the Upper Limb Module (ULM) and Revised Upper Limb Module (RULM), 37,44,[50][51][52] two used the Quality of Upper Extremity Skills, 47,48 and one study each used the Duchenne Muscular Dystrophy Functional Ability Self-Assessment Tool, Escala de Evaluaci on Funcional de Extremidades Superiores (EEFES), Web-based questionnaire (WBQ), Paediatric Outcomes Data Collection Instrument, DMD Upper Limb PROM, and Capabilities of Upper Extremity (CUE) instrument.…”

Section: Summary Of the Studies Included In The Reviewmentioning

confidence: 99%

“…16,44,54,57,[59][60][61]63 Eight of the instruments scored tasks according to the participants' ability by determining whether they could perform the task completely and independently or if they had difficulty doing so. 16,44,[57][58][59][60][61][62][63] Eleven of the instruments used English as the original language, 16,43,52,57,[59][60][61][62][63][64] while four were written in other languages. 16,[62][63][64] Quality of the measurement properties Table S3 (online supporting information) summarizes the quality of the measurement properties as determined by assessing all the instruments included using the COSMIN Risk of Bias checklist 21 and criteria of good measurement properties.…”

Section: Summary Of the Studies Included In The Reviewmentioning

confidence: 99%

“…9,16,19,[27][28][29][30][31]33,36,[38][39][40][41][42][43][44][45][46]49,[53][54][55]58 Most studies were conducted in the USA, 19,27,29,37,41,42,[46][47][48] followed by Italy, 40,45,50,51 Turkey, 28,34,35,39 and the Netherlands. 33,36,38,58 Five studies were multisite and included countries such as France, Spain, Germany, Belgium, Switzerland, Denmark, Canada, Ireland, Australia, Nepal, Peru, and India. 9,21,26,52,55 Summary of the instruments identified …”

Section: Summary Of the Studies Included In The Reviewmentioning

confidence: 99%

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Instruments to assess upper‐limb function in children and adolescents with neuromuscular diseases: a systematic review

Davoli¹,

Cardoso²,

Silva³

et al. 2021

Develop Med Child Neuro

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Aim To synthesize clinical and scientific evidence regarding the instruments available to assess upper‐limb function in paediatric patients with neuromuscular disease (NMD). Method This systematic review followed the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses and COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (Prospective Registry of Systematic Reviews no. CRD42020140343). Two independent reviewers searched the PubMed/MEDLINE, LILACS, Embase, and Scopus databases. Inclusion criteria were cross‐sectional or longitudinal studies or randomized controlled trials that used scales or questionnaires to assess upper‐limb function in paediatric patients with NMDs. The COSMIN Risk of Bias checklist and criteria for good measurement properties were applied to assess the methodological quality of the instruments. Results In total, 34 articles and 12 instruments were included. The Brooke Upper Extremity (n=16) and Performance of Upper Limb (PUL) (n=12) instruments were the most used tools. The PUL and Duchenne muscular dystrophy (DMD) Upper Limb patient‐reported outcome measures (PROMs) tested more measurement properties and provided higher methodological quality scores for patients with DMD. Likewise, the Revised Upper Limb Module (RULM) was the most suitable instrument for patients with spinal muscular atrophy. No instrument has been devised to assess upper‐limb function in patients with Charcot–Marie–Tooth disease and no other disease‐specific instruments were found. Interpretation The PUL, DMD Upper Limb PROM, and RULM are the most suitable instruments to assess upper‐limb function in the two most prevalent paediatric NMDs. The identified gaps and methodological flaws of the available instruments indicate a need to develop high‐quality instruments to assess other types of paediatric NMDs. The most suitable observer–rater instrument to assess upper‐limb function in Duchenne muscular dystrophy (DMD) is the Performance of Upper Limb. The most suitable observer–rater instrument to assess upper‐limb function in spinal muscular atrophy is the Revised Upper Limb Module. The DMD Upper Limb patient‐reported outcome measure is recommended to assess the upper‐limb performance of patients with DMD. Literature gaps and methodological flaws indicate the need to develop high‐quality instruments to assess other types of paediatric neuromuscular disease.

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