Respiratory muscle training in children and adults with neuromuscular disease

Silva, Ivanizia S; Pedrosa, Rafaela; Azevedo, Ingrid Guerra; Forbes, Anne‐Marie; Fregonezi, Guilherme A. F.; Junior, Mário ET Dourado; Lima, Suzianne Rh; Ferreira, Gardênia Maria H.

doi:10.1002/14651858.cd011711.pub2

Cited by 44 publications

(36 citation statements)

References 110 publications

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“…Impaired respiratory muscles, with ineffective cough reflex and decreased ventilation may lead to pneumonia and respiratory insufficiency. In the previous studies the efficacy of respiratory muscle training in DMD was not fully proven [ 17 ]; however, some authors have suggested that lung volume recruitment techniques may help to slow down the rate of decline of pulmonary function [ 18 , 19 ].…”

Section: Discussionmentioning

confidence: 99%

Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic

Sobierajska-Rek

Mański

Jabłońska-Brudło

et al. 2020

Wien Klin Wochenschr

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Summary Background Duchenne muscular dystrophy is a genetic disease characterized by gradual loss of motor function, respiratory failure and cardiomyopathy. During the time of the global coronavirus pandemic, maintenance of social distancing and self-isolation might complicate regular multidisciplinary care of patients with Duchenne muscular dystrophy but on the other hand may lead to new medical care telehealth solutions. The aim of the study was to investigate patients’ situation regarding rehabilitation in the pandemic, to establish an online rehabilitation program and motor assessment and to determine the needs of telerehabilitation in this group. Methods The project involved 69 boys with Duchenne muscular dystrophy. The rehabilitation program was presented during online workshops for patients and caregivers. The same program was recorded on video and published in the internet. The online motor assessment tool consisted of six motor tests, caregivers were asked to perform the tasks and share a photograph of the patient’s posture using a designed app. Results In the nonambulant group the emphasis was placed on chest physiotherapy, stretching of upper extremities, positioning and wheelchair ergonomics. The program for the ambulant group focused on lower extremities stretching and full body exercises. Response rate for the workshops for ambulant patients was 29.7%, and only 9.0% for nonambulant patients. Videos showing exercises were displayed 132 times within a month. Conclusion With the physiotherapist guidance (online communication or video) patients with caregivers’ help can continue home based rehabilitation. Online videos/instructions/video guidelines are more acceptable by parents/caregivers of patients with Duchenne muscular dystrophy than live workshops.

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Section: Discussionmentioning

confidence: 99%

Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic

Sobierajska-Rek

Mański

Jabłońska-Brudło

et al. 2020

Wien Klin Wochenschr

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“…Considering that one of the objectives of this study was to assess the feasibility of this respiratory technique in a future clinical trial [6], 20% of the calculation of the ideal sample size (n = 42) proposed in the original protocol [6] was considered. In the original study conducted by Dorça et al [6], sample size calculations were performed based on a meta-analysis conducted by Silva et al [14]. Additionally, considering the low prevalence of disease, the present study's sample size was selected based on a reasonable estimate of the number of available participants that would meet the eligibility criteria during the planned 3 month study period.…”

Section: Sample Sizementioning

confidence: 99%

A Pilot Study of the Breath Stacking Technique Associated with Respiratory Muscle Endurance Training in Patients with Amyotrophic Lateral Sclerosis: Videofluoroscopic Findings in the Upper Airway

Dorça

Sarmet

Rocha

et al. 2021

Advances in Respiratory Medicine

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Introduction: Bulbar impairment represents a hallmark feature of amyotrophic lateral sclerosis (ALS) that significantly impacts survival and quality of life. Respiratory complications arise because of the weakness of the upper airway and respiratory muscles leading to respiratory failure, impaired swallowing, and reduced airway safety. Breath stacking and respiratory muscle endurance training are techniques that have been described to improve respiratory and bulbar function in patients with ALS. Considering the above, a respiratory technique named TR3 was developed. This study aimed to measure the acute effects of this technique on the upper airway through videofluoroscopy and to assess its clinical trial feasibility in patients with ALS. Material and methods: In this cross-sectional study, we enrolled participants diagnosed with ALS to perform a single session of TR3. Epidemiological data and baseline assessments were collected. The assessments included kinematics from videofluoroscopy measuring the retropalatal airspace size, the size of the narrowest airway, and the pharyngeal area during rest and TR3. Results: Eight participants were included. During TR3, an acute increase of 15% was observed in the retropalatal airspace size (t = 5.14, p < 0.01), a 123% increase was observed in the size of the narrowest airway (t = -4.18, p < 0.001), and a 277% increase was observed in the pharyngeal area (t = -5.34, p < 0.001). Conclusions: During the intervention, TR3 showed acute effects in increasing pharyngeal constriction, pharyngeal expansion, retropalatal airspace size, and post-lingual narrowest airway size and is feasible for a larger research program. A clinical trial (NCT04226144) is already being conducted to assess the chronic therapeutic effects of this technique and its impact on the clinical evolution of ALS.

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“…At a minimum, the respiratory NMD MDT should be staffed and equipped to be able to offer manual assisted coughs, mechanical insufflation–exsufflation, lung volume recruitment, glossopharyngeal breathing, and chest wall percussion and oscillation [ 59 ]. It is important to note that while it may seem intuitively useful [ 60 ] and does not cause any harm [ 61 ], there is no convincing evidence for the use of respiratory muscle training to improve clinical outcomes or quality of life in NMD patients [ 62 , 63 ].…”

Section: Secretion Managementmentioning

confidence: 99%

The adult multidisciplinary respiratory neuromuscular clinic

Shah

Murphy

Kaltsakas

2020

Breathe

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Many neuromuscular disorders (NMD) are complicated by respiratory failure. These patients are best managed in a multidisciplinary outpatient clinic to provide timely access to the various disciplines they require. The key mainstay of treatment of respiratory failure in patients with NMD is noninvasive ventilation, supported by secretion clearance, speech and language therapy, optimisation of nutrition and the maintenance of mobility. Patients with specific conditions may also require cardiology, neurology, orthopaedics, urology and psychological services. The respiratory NMD multidisciplinary team should also provide access to palliative care, and caregiver health and wellbeing should also be reviewed at clinical reviews. The future of care for the respiratory NMD patient will increasingly involve home services and telehealth and the clinic should be equipped and resourced to deliver these. Although not all health systems will be able to provide all elements of the multidisciplinary team discussed here, this review provides the “ideal” recipe for the adult multidisciplinary team and the evidence base underpinning this from which a clinic can be developed.Educational aimsTo provide an overview of the care of an adult neuromuscular disorder patient presenting to the multidisciplinary respiratory clinic.To provide the evidence base for establishing the different elements of the multidisciplinary respiratory clinic.

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Respiratory muscle training in children and adults with neuromuscular disease

Cited by 44 publications

References 110 publications

Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic

Establishing a telerehabilitation program for patients with Duchenne muscular dystrophy in the COVID-19 pandemic

A Pilot Study of the Breath Stacking Technique Associated with Respiratory Muscle Endurance Training in Patients with Amyotrophic Lateral Sclerosis: Videofluoroscopic Findings in the Upper Airway

The adult multidisciplinary respiratory neuromuscular clinic

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