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Article ; Online: A Randomized Controlled Clinical Trial of Lung Volume Recruitment in Adults with Neuromuscular Disease.

Sheers, Nicole L / Howard, Mark E / Rochford, Peter D / Rautela, Linda / Chao, Caroline / McKim, Douglas A / Berlowitz, David J

Annals of the American Thoracic Society

2023 Volume 20, Issue 10, Page(s) 1445–1455

Abstract: Rationale: ...

Abstract	Rationale:
MeSH term(s)	Female ; Humans ; Adult ; Middle Aged ; Adolescent ; Quality of Life ; Prospective Studies ; Lung Volume Measurements ; Lung ; Neuromuscular Diseases/complications
Language	English
Publishing date	2023-06-30
Publishing country	United States
Document type	Randomized Controlled Trial ; Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2717461-X
ISSN	2325-6621 ; 1943-5665 ; 2325-6621
ISSN (online)	2325-6621 ; 1943-5665
ISSN	2325-6621
DOI	10.1513/AnnalsATS.202212-1062OC
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Article ; Online: The effect of emerging molecular and genetic therapies on cardiopulmonary disease in Duchenne muscular dystrophy.

McKim, Douglas A / Cripe, Timothy P / Cripe, Linda H

Pediatric pulmonology

2020 Volume 56, Issue 4, Page(s) 729–737

Abstract: Gene therapy is an attractive approach being intensively studied to prevent muscle deterioration in patients with Duchenne muscular dystrophy. While clinical trials are only in early stages, initial reports are promising for its effects on ambulation. ... ...

Abstract	Gene therapy is an attractive approach being intensively studied to prevent muscle deterioration in patients with Duchenne muscular dystrophy. While clinical trials are only in early stages, initial reports are promising for its effects on ambulation. Cardiopulmonary failure, however, is the most common cause of mortality in Duchenne muscular dystrophy (DMD) patients, and little is known regarding the prospects for gene therapy on alleviating DMD-associated cardiomyopathy and respiratory failure. Here we review current knowledge regarding effects of gene therapy on DMD cardiomyopathy and discuss respiratory endpoints that should be considered as outcome measures in future clinical trials.
MeSH term(s)	Cardiomyopathies/genetics ; Cardiomyopathies/therapy ; Genetic Therapy ; Humans ; Muscular Dystrophy, Duchenne/complications ; Muscular Dystrophy, Duchenne/genetics ; Muscular Dystrophy, Duchenne/therapy ; Walking
Language	English
Publishing date	2020-11-03
Publishing country	United States
Document type	Journal Article ; Review
ZDB-ID	632784-9
ISSN	1099-0496 ; 8755-6863
ISSN (online)	1099-0496
ISSN	8755-6863
DOI	10.1002/ppul.25079
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Article ; Online: Continuous Mouthpiece Daytime Amyotrophic Lateral Sclerosis in Noninvasive Ventilation: Definitive Solid Therapy?-Reply.

Bédard, Marie-Eve / McKim, Douglas A

Respiratory care

2017 Volume 62, Issue 3, Page(s) 387–388

MeSH term(s)	Amyotrophic Lateral Sclerosis ; Humans ; Noninvasive Ventilation ; Respiratory Insufficiency
Language	English
Publishing date	2017
Publishing country	United States
Document type	Letter ; Comment
ZDB-ID	603252-7
ISSN	1943-3654 ; 0098-9142 ; 0020-1324
ISSN (online)	1943-3654
ISSN	0098-9142 ; 0020-1324
DOI	10.4187/respcare.05453
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Article ; Online: Respiratory Management of Patients With Neuromuscular Weakness: An American College of Chest Physicians Clinical Practice Guideline and Expert Panel Report.

Khan, Akram / Frazer-Green, Lindsy / Amin, Reshma / Wolfe, Lisa / Faulkner, Garner / Casey, Kenneth / Sharma, Girish / Selim, Bernardo / Zielinski, David / Aboussouan, Loutfi S / McKim, Douglas / Gay, Peter

Chest

2023 Volume 164, Issue 2, Page(s) 394–413

Abstract: Background: Respiratory failure is a significant concern in neuromuscular diseases (NMDs). This CHEST guideline examines the literature on the respiratory management of patients with NMD to provide evidence-based recommendations.: Study design and ... ...

Abstract	Background: Respiratory failure is a significant concern in neuromuscular diseases (NMDs). This CHEST guideline examines the literature on the respiratory management of patients with NMD to provide evidence-based recommendations. Study design and methods: An expert panel conducted a systematic review addressing the respiratory management of NMD and applied the Grading of Recommendations, Assessment, Development, and Evaluations approach for assessing the certainty of the evidence and formulating and grading recommendations. A modified Delphi technique was used to reach a consensus on the recommendations. Results: Based on 128 studies, the panel generated 15 graded recommendations, one good practice statement, and one consensus-based statement. Interpretation: Evidence of best practices for respiratory management in NMD is limited and is based primarily on observational data in amyotrophic lateral sclerosis. The panel found that pulmonary function testing every 6 months may be beneficial and may be used to initiate noninvasive ventilation (NIV) when clinically indicated. An individualized approach to NIV settings may benefit patients with chronic respiratory failure and sleep-disordered breathing related to NMD. When resources allow, polysomnography or overnight oximetry can help to guide the initiation of NIV. The panel provided guidelines for mouthpiece ventilation, transition to home mechanical ventilation, salivary secretion management, and airway clearance therapies. The guideline panel emphasizes that NMD pathologic characteristics represent a diverse group of disorders with differing rates of decline in lung function. The clinician's role is to add evaluation at the bedside to shared decision-making with patients and families, including respect for patient preferences and treatment goals, considerations of quality of life, and appropriate use of available resources in decision-making.
MeSH term(s)	Humans ; Quality of Life ; Respiration, Artificial ; Noninvasive Ventilation ; Respiratory Insufficiency/etiology ; Respiratory Insufficiency/therapy ; Physicians
Language	English
Publishing date	2023-03-13
Publishing country	United States
Document type	Systematic Review ; Practice Guideline ; Research Support, Non-U.S. Gov't ; Journal Article
ZDB-ID	1032552-9
ISSN	1931-3543 ; 0012-3692
ISSN (online)	1931-3543
ISSN	0012-3692
DOI	10.1016/j.chest.2023.03.011
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Article ; Online: Objective measurement of lung volume recruitment therapy: laboratory and clinical validation.

Naughton, Phoebe E / Sheers, Nicole / Berlowitz, David J / Howard, Mark E / McKim, Douglas A / Katz, Sherri L

BMJ open respiratory research

2021 Volume 8, Issue 1

Abstract: Lung volume recruitment manoeuvres are often prescribed to maintain respiratory health in neuromuscular disease. Unfortunately, no current system accurately records delivered dose. This study determined the performance characteristics of a novel, ... ...

Abstract	Lung volume recruitment manoeuvres are often prescribed to maintain respiratory health in neuromuscular disease. Unfortunately, no current system accurately records delivered dose. This study determined the performance characteristics of a novel, objective, manual lung volume recruitment bag counter ('the counter') with bench and healthy volunteer testing, as well as in individuals with neuromuscular disease. We undertook (1) bench test determination of activation threshold, (2) bench and healthy volunteer fidelity testing during simulated patient interface leak and different pressure compressions and (3) comparisons with self-report in individuals with neuromuscular disease. The data are reported as summary statistics, compression counts, percentage of recorded versus delivered compressions and concordance (Cohen's kappa (K) and absolute agreement). RESULTS: Minimum counter activation pressure under conditions of zero leak was 1.9±0.4 cm H
MeSH term(s)	Humans ; Laboratories ; Lung Volume Measurements ; Positive-Pressure Respiration
Language	English
Publishing date	2021-07-29
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	2736454-9
ISSN	2052-4439 ; 2052-4439
ISSN (online)	2052-4439
ISSN	2052-4439
DOI	10.1136/bmjresp-2021-000918
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Article ; Online: Laryngospasm in amyotrophic lateral sclerosis.

Gotesman, Ryan D / Lalonde, Emilie / McKim, Douglas A / Bourque, Pierre R / Warman-Chardon, Jodi / Zwicker, Jocelyn / Breiner, Ari

Muscle & nerve

2021 Volume 65, Issue 4, Page(s) 400–404

Abstract: Introduction: Laryngospasm is an involuntary, sustained closure of sphincter musculature that leads to an unpleasant subjective experience of dyspnea and choking. It is an underreported symptom in amyotrophic lateral sclerosis (ALS). In this study we ... ...

Abstract	Introduction: Laryngospasm is an involuntary, sustained closure of sphincter musculature that leads to an unpleasant subjective experience of dyspnea and choking. It is an underreported symptom in amyotrophic lateral sclerosis (ALS). In this study we aimed to better characterize the prevalence and clinical characteristics of laryngospasm in ALS patients. Methods: The medical records of 571 patients with ALS followed between 2008 and 2018 were searched for evidence of laryngospasm. A total of 23 patients with laryngospasm were identified and the data related to patient and laryngospasm characteristics were extracted. Results: Laryngospasm was reported in 4% of ALS patients. Females comprised 57% of patients and their mean age was 63.4 years. Laryngospasm frequently manifested in patients with moderate bulbar dysfunction and seemed independent of respiratory function. Among laryngospasm patients, 26% were cigarette smokers and 13% had a history of gastroesophageal reflux. The most common reported trigger was excessive saliva irritating the vocal cords (35%) followed by eating a meal (17%). There was significant variation in laryngospasm frequency (up to 5 per hour) and duration (seconds to minutes). Most patients could not identify an effective coping mechanism, although 13% reported that drinking water was effective. Discussion: Despite its low prevalence in ALS, laryngospasm should be included in the symptom inquiry. The present findings may improve patient care through increased recognition of the clinical features of laryngospasm in ALS patients, identifying a link between laryngospasm and moderate bulbar dysfunction, and highlighting trigger avoidance as a management strategy. Additional research is required to understand the pathophysiology and optimal treatment.
MeSH term(s)	Amyotrophic Lateral Sclerosis/complications ; Amyotrophic Lateral Sclerosis/diagnosis ; Amyotrophic Lateral Sclerosis/epidemiology ; Dyspnea ; Female ; Humans ; Laryngismus/complications ; Laryngismus/epidemiology ; Male ; Middle Aged ; Respiration ; Vocal Cords
Language	English
Publishing date	2021-12-21
Publishing country	United States
Document type	Journal Article
ZDB-ID	438353-9
ISSN	1097-4598 ; 0148-639X
ISSN (online)	1097-4598
ISSN	0148-639X
DOI	10.1002/mus.27466
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Zs.A 1449: Show issues			Location: Je nach Verfügbarkeit (siehe Angabe bei Bestand) bis Jg. 1994: Bestellungen von Artikeln über das Online-Bestellformular Jg. 1995 - 2021: Lesesall (1.OG) ab Jg. 2022: Lesesaal (EG)
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Article ; Online: Daytime Mouthpiece for Continuous Noninvasive Ventilation in Individuals With Amyotrophic Lateral Sclerosis.

Bédard, Marie-Eve / McKim, Douglas A

Respiratory care

2016 Volume 61, Issue 10, Page(s) 1341–1348

Abstract: Background: Noninvasive ventilation (NIV) is commonly used to provide ventilatory support for individuals with amyotrophic lateral sclerosis (ALS). Once 24-h ventilation is required, the decision between invasive tracheostomy ventilation and palliation ... ...

Abstract	Background: Noninvasive ventilation (NIV) is commonly used to provide ventilatory support for individuals with amyotrophic lateral sclerosis (ALS). Once 24-h ventilation is required, the decision between invasive tracheostomy ventilation and palliation is often faced. This study describes the use and outcomes of daytime mouthpiece ventilation added to nighttime mask ventilation for continuous NIV in subjects with ALS as an effective alternative. Methods: This was a retrospective study of 39 subjects with ALS using daytime mouthpiece ventilation over a 17-y period. Results: Thirty-one subjects were successful with mouthpiece ventilation, 2 were excluded, 2 stopped because of lack of motivation, and 4 with bulbar subscores of the Revised Amyotrophic Lateral Sclerosis Functional Rating Scale (b-ALSFRS-R) between 0 and 3 physically failed to use it consistently. No subject in the successful group had a b-ALSFRS-R score of <6. Thirty of the successful subjects were able to generate a maximum insufflation capacity - vital capacity difference with lung volume recruitment. The median (range) survival to tracheostomy or death from initiation of nocturnal NIV and mouthpiece ventilation were 648 (176-2,188) and 286 (41-1,769) d, respectively. Peak cough flow with lung-volume recruitment >180 L/min at initiation of mouthpiece ventilation was associated with a longer survival (637 ± 468 vs 240 ± 158 d (P = .01). Conclusions: Mouthpiece ventilation provides effective ventilation and prolonged survival for individuals with ALS requiring full-time ventilatory support and maintaining adequate bulbar function.
MeSH term(s)	Aged ; Amyotrophic Lateral Sclerosis/complications ; Amyotrophic Lateral Sclerosis/therapy ; Female ; Humans ; Insufflation/instrumentation ; Insufflation/methods ; Male ; Middle Aged ; Mouth ; Noninvasive Ventilation/instrumentation ; Noninvasive Ventilation/methods ; Peak Expiratory Flow Rate ; Respiratory Insufficiency/etiology ; Respiratory Insufficiency/therapy ; Retrospective Studies ; Time Factors ; Treatment Outcome ; Vital Capacity
Language	English
Publishing date	2016-10
Publishing country	United States
Document type	Evaluation Studies ; Journal Article
ZDB-ID	603252-7
ISSN	1943-3654 ; 0098-9142 ; 0020-1324
ISSN (online)	1943-3654
ISSN	0098-9142 ; 0020-1324
DOI	10.4187/respcare.04309
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Article: The experience of family caregivers of ventilator-assisted individuals who participated in a pilot web-based peer support program: A qualitative study.

Wasilewski, Marina B / Kokorelias, Kristina M / Nonoyama, Mika / Dale, Craig / McKim, Douglas A / Road, Jeremy / Leasa, David / Tandon, Anu / Goldstein, Roger / Rose, Louise

Digital health

2022 Volume 8, Page(s) 20552076221134964

Abstract: Introduction: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the ... ...

Abstract	Introduction: Family caregivers play an important role supporting the day-to-day needs of ventilator-assisted individuals (VAIs) living at home. Peer-to-peer communication can help support these caregivers and help them sustain caregiving in the community. Online peer-support has been suggested as a way to help meet caregivers' support needs. Methods: A qualitative descriptive approach was used to elicit the perspectives of support received from caregivers who participated in a pilot web-based peer support program from October to December 2018. Data were collected through the transcripts of weekly online peer-to-peer group chats. Data were analyzed using an integration of thematic and framework analysis. Results: In total, eight caregivers and five peer mentors participated in the pilot. All five mentors and four of the caregivers participated in the weekly chats. We identified three themes, a) The experience of caregivers is characterized by unique challenges related to the complexity of VAI care including technology; b) Mentors and caregiver participants reciprocally share support; c) Despite hardships, there are things that make caregiving easier and joyful. Discussion: Our results add to the growing body of evidence pointing to the importance of online communities for supporting vulnerable caregivers. The reciprocal element of peer support, where trained mentors and untrained participants both benefit from support, can help sustain peer-support interventions. Despite the challenges of providing care to a VAI, there are facilitators that may help ease the caregiving experience and caregivers can benefit from ongoing support that is tailored to their needs along the caregiving trajectory.
Language	English
Publishing date	2022-11-25
Publishing country	United States
Document type	Journal Article
ZDB-ID	2819396-9
ISSN	2055-2076
ISSN	2055-2076
DOI	10.1177/20552076221134964
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Article ; Online: Cardiorespiratory management of Duchenne muscular dystrophy: emerging therapies, neuromuscular genetics, and new clinical challenges.

Birnkrant, David J / Bello, Luca / Butterfield, Russell J / Carter, John C / Cripe, Linda H / Cripe, Timothy P / McKim, Douglas A / Nandi, Deipanjan / Pegoraro, Elena

The Lancet. Respiratory medicine

2022 Volume 10, Issue 4, Page(s) 403–420

Abstract: The life-limiting complications of Duchenne muscular dystrophy (DMD) include loss of lung function and progressive cardiomyopathy; when patients are treated with assisted ventilation, cardiac function becomes the main determinant of survival. Therapy for ...

Abstract	The life-limiting complications of Duchenne muscular dystrophy (DMD) include loss of lung function and progressive cardiomyopathy; when patients are treated with assisted ventilation, cardiac function becomes the main determinant of survival. Therapy for DMD is changing rapidly, with the emergence of new genetic and molecular therapeutic options, the proliferation of which has fostered the perception that DMD is a potentially curable disease. However, data for respiratory and cardiac outcomes are scarce and available evidence is not uniformly positive. Patients who share a dystrophin (DMD) genotype can have highly divergent cardiorespiratory phenotypes; genetic modifiers of DMD gene expression are a probable cause of respiratory and cardiac phenotypic variability and discordance. In this Personal View, we provide an overview of new and emerging DMD therapies, highlighting the limitations of current research and considering strategies to incorporate cardiorespiratory assessments into clinical trials. We explore how genetic modifiers could be used to predict cardiorespiratory natural history and how manipulation of such modifiers might represent a promising therapeutic strategy. Finally, we examine the changing role of respiratory physicians, cardiologists, and intensive care clinicians on the frontline of a challenging new clinical landscape.
MeSH term(s)	Genotype ; Humans ; Muscular Dystrophy, Duchenne/genetics ; Muscular Dystrophy, Duchenne/therapy ; Phenotype
Language	English
Publishing date	2022-04-01
Publishing country	England
Document type	Journal Article ; Review ; Research Support, N.I.H., Extramural ; Research Support, Non-U.S. Gov't ; Research Support, U.S. Gov't, P.H.S.
ZDB-ID	2686754-0
ISSN	2213-2619 ; 2213-2600
ISSN (online)	2213-2619
ISSN	2213-2600
DOI	10.1016/S2213-2600(21)00581-6
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Article ; Online: The Oral Secretion Scale and Prognostic Factors for Survival in Subjects With Amyotrophic Lateral Sclerosis.

Cazzolli, Pamela A / Brooks, Benjamin Rix / Nakayama, Yuki / Lewarski, Joseph S / McKim, Douglas A / Holt, Sheryl L / Chatburn, Robert L

Respiratory care

2020 Volume 65, Issue 8, Page(s) 1063–1076

Abstract: Background: Noninvasive ventilation (NIV) can be tolerated in patients with amyotrophic lateral sclerosis (ALS), unless bulbar impairment becomes severe. Excessive oral secretions may result in NIV intolerance and insufficient ventilation.: Objective!# ...

Abstract	Background: Noninvasive ventilation (NIV) can be tolerated in patients with amyotrophic lateral sclerosis (ALS), unless bulbar impairment becomes severe. Excessive oral secretions may result in NIV intolerance and insufficient ventilation. Objective: To assess the reliability of the Oral Secretion Scale (OSS) for predicting the tolerance of NIV, when to initiate hospice or transition to tracheostomy, and prognostic factors for survival of users of NIV. Methods: A validated OSS was developed to measure oral secretions in correlation with the ability to swallow saliva and clear the upper airway: OSS score of 4 = normal (automatic swallow); OSS score of 3 = infrequent secretions (automatic swallow decreased); OSS score of 2 = occasional drooling and/or pooling (conscious swallow required); OSS score of 1 = severe, frequent drooling and/or pooling (conscious swallow difficult); OSS score of 0 = most severe, constant drooling/pooling (conscious swallow impossible). A total of 137 subjects were followed up prospectively during ongoing patient visits from NIV initiation until death or tracheostomy. Survival was calculated by using Kaplan-Meier analysis. OSS scores when NIV became intolerable were determined. Uni- and/or multivariate Cox-regression analyses showed prognostic factors that affect survival. Results: The median months of survival from NIV initiation were the following: 11 (95% CI 7.3-14.0), 5 (95% CI 3.1-6.1), and 1 (95% CI 1.1-1.5) stratified by OSS scores of 4, 3-2, and 1, respectively; and 21 (95% CI 8.6-33.2), 8 (95% CI 3.4-11.5), 6 (95% CI 4.2-8.2), and 2 (95% CI 1.5-2.7) stratified by 24, 17-23, 4-16, and <4 h/d of NIV use, respectively. Survival was significantly ( Conclusions: The subjects with an OSS score of 4 tolerated NIV and survived significantly longer than subjects with an OSS score of <4. An OSS score of 1 signaled NIV intolerance and the need for hospice or transition to planned tracheostomy. Use of OSS can help guide NIV management decisions.
MeSH term(s)	Amyotrophic Lateral Sclerosis/complications ; Amyotrophic Lateral Sclerosis/therapy ; Bodily Secretions ; Humans ; Noninvasive Ventilation ; Prognosis ; Reproducibility of Results ; Respiratory Insufficiency ; Time Factors
Language	English
Publishing date	2020-03-03
Publishing country	United States
Document type	Journal Article
ZDB-ID	603252-7
ISSN	1943-3654 ; 0098-9142 ; 0020-1324
ISSN (online)	1943-3654
ISSN	0098-9142 ; 0020-1324
DOI	10.4187/respcare.07005
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