Longitudinal community walking activity in Duchenne muscular dystrophy

Fowler, Eileen; Staudt, Loretta A.; Heberer, Kent; Sienko, Susan; Buckon, Cathleen E.; Bagley, Anita; Sussman, Michael D.; McDonald, Craig M.

doi:10.1002/mus.25743

Cited by 34 publications

(41 citation statements)

References 31 publications

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“…With advances in technology, new therapies will probably be assessed increasingly through activity monitoring in combination with measurements of new, clinically meaningful biomarkers. 127 Robotics and other rapid advances in technology will improve independence, participation, and quality of life. Emerging therapies such as dystrophin-restorative therapies might improve exercise or activity capacity and safety.…”

Section: Discussionmentioning

confidence: 99%

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management

Birnkrant

Bushby

Bann

et al. 2018

The Lancet Neurology

878

1,080

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Since the publication of the Duchenne muscular dystrophy (DMD) care considerations in 2010, multidisciplinary care of this severe, progressive neuromuscular disease has evolved. In conjunction with improved patient survival, a shift to more anticipatory diagnostic and therapeutic strategies has occurred, with a renewed focus on patient quality of life. In 2014, a steering committee of experts from a wide range of disciplines was established to update the 2010 DMD care considerations, with the goal of improving patient care. The new care considerations aim to address the needs of patients with prolonged survival, to provide guidance on advances in assessments and interventions, and to consider the implications of emerging genetic and molecular therapies for DMD. The committee identified 11 topics to be included in the update, eight of which were addressed in the original care considerations. The three new topics are primary care and emergency management, endocrine management, and transitions of care across the lifespan. In part 1 of this three-part update, we present care considerations for diagnosis of DMD and neuromuscular, rehabilitation, endocrine (growth, puberty, and adrenal insufficiency), and gastrointestinal (including nutrition and dysphagia) management.

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Section: Discussionmentioning

confidence: 99%

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management

Birnkrant

Bushby

Bann

et al. 2018

The Lancet Neurology

878

1,080

View full text Add to dashboard Cite

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“…The relationships identified between TPA mins and KEMVC in BMD are furthered by the stronger relationship of TPA mins with 10 m walk time in ambulant MD participants and are consistent with those relationships identified within elderly populations 24,70 and paediatric DMD populations. 58 However, future work is required to quantify activity thresholds relative to separate conditions, and between ambulant and non-ambulant individuals, in order to quantify PA intensities, and the relative intensities relationships with functional outcomes.…”

Section: Discussionmentioning

confidence: 99%

“…The four participants to not perform the 10 m walk did so at their own request due to safety concerns. The 10 m walk was performed on an even, carpeted surface and is a common measure of function within neuromuscular conditions . All participants started in a standing position and were instructed to walk as quickly and safely as they could, with the time recorded from the point of ‘Go’ from the practitioner to the point of crossing the finish line.…”

Section: Methodsmentioning

confidence: 99%

Relationships between muscle size, strength, and physical activity in adults with muscular dystrophy

Jacques

Onambélé-Pearson

Reeves

et al. 2018

J cachexia sarcopenia muscle

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BackgroundMuscular dystrophy (MD) is characterized by progressive muscle wasting and weakness, yet few comparisons to non‐MD controls (CTRL) of muscle strength and size in this adult population exist. Physical activity (PA) is promoted to maintain health and muscle strength within MD; however, PA reporting in adults with MD is limited to recall data, and its impact on muscle strength is seldom explored.MethodsThis study included 76 participants: 16 non‐MD (CTRL, mean age 35.4), 15 Duchenne MD (DMD, mean age 24.2), 18 Becker's MD (BMD, mean age 42.4), 13 limb‐girdle MD (LGMD, mean age 43.1), and 14 facioscapulohumeral MD (mean age 47.7). Body fat (%) and lean body mass (LBM) were measured using bioelectrical‐impedance. Gastrocnemius medialis (GM) anatomical cross‐sectional area (ACSA) was determined using B‐mode ultrasound. Isometric maximal voluntary contraction (MVC) was assessed during plantar flexion (PFMVC) and knee extension (KEMVC). PA was measured for seven continuous days using triaxial accelerometry and was expressed as daily average minutes being physically active (TPAmins) or average daily percentage of waking hours being sedentary (sedentary behaviour). Additionally, 10 m walk time was assessed.ResultsMuscular dystrophy groups had 34–46% higher body fat (%) than CTRL. DMD showed differences in LBM with 21–28% less LBM than all other groups. PFMVC and KEMVC were 36–75% and 24–92% lower, respectively, in MD groups than CTRL. GM ACSA was 47% and 39% larger in BMD and LGMD, respectively, compared with CTRL. PFMVC was associated with GM ACSA in DMD (P = 0.026, R = 0.429) and CTRL (P = 0.015, R = 0.553). MD groups were 14–38% more sedentary than CTRL groups, while DMD were more sedentary than BMD (14%), LGMD (8%), and facioscapulohumeral MD (14%). Sedentary behaviour was associated with LBM in DMD participants (P = 0.021, R = −0.446). TPAmins was associated with KEMVC (P = 0.020, R = 0.540) in BMD participants, while TPAmins was also the best predictor of 10 m walk time (P < 0.001, R 2 = 0.540) in ambulant MD, revealed by multiple linear regression.ConclusionsQuantified muscle weakness and impaired 10 m walking time is reported in adults with MD. Muscle weakness and 10 m walk time were associated with lower levels of TPA in adults with MD. Higher levels of sedentary behaviour were associated with reduced LBM in DMD. These findings suggest a need for investigations into patterns of PA behaviour, and relevant interventions to reduce sedentary behaviour and encourage PA in adults with MD regardless of impairment severity.

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“…Accelerometers have been shown to be useful in monitoring gait (eg, overall physical activity level, step activity and gait alterations) in boys with DMD and in children with other neurological diseases . Most of the experience with the use of accelerometers in the UEs is in adult patients with stroke and multiple sclerosis .…”

Section: Introductionmentioning

confidence: 99%

“…12 Accelerometers have been shown to be useful in monitoring gait (eg, overall physical activity level, step activity and gait alterations) in boys with DMD and in children with other neurological diseases. [13][14][15][16][17][18][19][20][21] Most of the experience with the use of accelerometers in the UEs is in adult patients with stroke and multiple sclerosis. [22][23][24][25] Uswatte et al 26 showed that if complementary self-reported measures are used simultaneously they can provide rich information about UE activities.…”

Section: Introductionmentioning

confidence: 99%

Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

Geest¹,

Essers

Bergsma

et al. 2019

Muscle and Nerve

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Introduction Accelerometry of the upper extremity (UE) potentially provides information on the extent of activities in daily life in patients with Duchenne muscular dystrophy (DMD). The objective of this study is to evaluate the validity of home measurements of UE accelerometry. Methods This was a cross‐sectional study in 16 patients with DMD (aged 7‐17 years). Patients were monitored for 1 to 3 days with two accelerometers on the UE and one accelerometer on the wheelchair. Results The mean intensity of activity and the mean frequency of transfers of arm elevation from low to middle were approximately twofold higher in patients with a Brooke scale score of 1 or 2 than in patients with a Brooke scale score of 3 or 4. Correlations with the Performance of Upper Limb scale score were high for intensity and for the total frequency of arm elevations per hour. Discussion Intensity, percentage of time in middle orientation, and frequency of transfers of the upper arm correlated well with functional measurements.

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Longitudinal community walking activity in Duchenne muscular dystrophy

Abstract: Community ambulation data provide valid and sensitive real-world measures that may inform clinical trials. Muscle Nerve 57: 401-406, 2018.

Cited by 34 publications

References 31 publications

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management

Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and neuromuscular, rehabilitation, endocrine, and gastrointestinal and nutritional management

Relationships between muscle size, strength, and physical activity in adults with muscular dystrophy

Monitoring daily physical activity of upper extremity in young and adolescent boys with Duchenne muscular dystrophy: A pilot study

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