Duchenne muscular dystrophy: Survival by cardio-respiratory interventions

Ishikawa, Yoshihiro; Miura, Takeshi; Ishikawa, Yoshimoto; Aoyagi, Tomoyuki; Ogata, Hitoko; Hamada, Shin; Minami, Ryoji

doi:10.1016/j.nmd.2010.09.006

Cited by 242 publications

(217 citation statements)

References 27 publications

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“…A su vez, la mediana de edad fue de 10 años, período que se asocia con la declinación de la función respiratoria de los niños con ENM lentamente progresivas 4,[8][9][10] . en este contexto, se ha observado que alrededor de los 6-8 años de vida, los pacientes con eNM experimentan una declinación de su capacidad funcional, comprometiendo el desarrollo motor y la capacidad respiratoria 14 .…”

Section: Discussionunclassified

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Poligrafía en niños con enfermedad neuromuscular

Zenteno

N²,

et al. 2015

Rev. chil. enferm. respir.

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Section: Discussionunclassified

“…en este contexto, se ha observado que la VNI revierte la hipoxemia, normaliza la arquitectura del sueño, reduce la morbilidad y mejora la calidad de vida en niños con eNM [8][9][10] .…”

Section: Poligrafíaunclassified

Poligrafía en niños con enfermedad neuromuscular

Zenteno

N²,

et al. 2015

Rev. chil. enferm. respir.

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“…We encourage manufacturers to develop non-leak nasal pillows, which may be an alternative to mouthpiece MV during daytime. 18 Another solution to reduce the risk of skin damage is to alternate various types of interfaces. If most prescribers are in favor of this solution, it is not the case for the patients.…”

Section: Evaluation Of the Patients' Equipment Versus The Prescribersmentioning

confidence: 99%

Long-Term Mechanical Ventilation Equipment for Neuromuscular Patients: Meeting the Expectations of Patients and Prescribers

Lofaso¹,

Prigent²,

Tiffreau³

et al. 2013

Respir Care

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BACKGROUND:To maximize the likelihood of successful long-term mechanical ventilation (MV) in patients with neuromuscular diseases, ventilator characteristics and settings must be chosen carefully, taking into account both medical requisites and the patient's preference and comfort. OBJECTIVES: To evaluate patients' knowledge about and comfort with their long-term MV; to compare patients' and prescribers' opinions and expectations regarding long-term MV; and to compare the equipment used by the patients to the prescribers' current MV prescription. METHODS: Neuromuscular patients receiving long-term MV, and home MV prescribers in Belgium and France were asked to respond to a questionnaire survey specifically developed for the study. RESULTS: Completed questionnaires were collected from 209 patients (mean age 35.4 ؎ 15.9 y, range 3-86 y), ventilated since 11 ؎ 17 year, and 45 MV prescribers. One hundred sixty-three (78%) patients correctly designated their MV mode as a volume or pressure controlled mode. When an inspiratory trigger was available, 92% of the patients were able to use it, but only 69% were satisfied. Prescribers were more prone than patients to use new technologies such as an emergency-release system for the noninvasive interface (1-10 visual analog scale score 9.2 ؎ 1.5 vs 6.8 ؎ 3.3, P < .001), a humidification system (8.6 ؎ 1.4 vs 7.8 ؎ 2.6, P ‫؍‬ .02), a contactor for providing larger inspiratory volumes (8.4 ؎ 1.7 vs 6.0 ؎ 3.0, P ‫؍‬ .009), a built-in cough assistance mode (9.2 ؎ 1.4 vs 5.5 ؎ 3.5, P < .001), new options to improve speech, or new MV modes such as a volume-targeted pressure control. CONCLUSIONS: The opinions of patients and prescribers differed about the ideal home ventilator. Patients were less prone to use new technologies, mainly because of a lack of information, underlining the need for regular MV update in patients receiving long-term MV.

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“…A 2011 study by Ishikawa et al reported significantly greater life expectancy with NIV than with tracheostomy ventilation (38.6 years versus 28.9 years, respectively,) 3 in part because of the ancillary techniques permitted by NIV, such as glossopharyngeal breathing, breath-stacking, and mechanically assisted coughing, while avoiding life-threatening complications of tracheostomy. 4 It is true that NIV requires an expert term who can manage both adult and pediatric patients in both the chronic and acute care settings, but, considering the benefits to longevity and quality of life, we feel that this should be the goal of every clinician who specializes in the treatment of patients with Duchenne muscular dystrophy or other neuromuscular disorder.…”

Section: Is Noninvasive Ventilation Possible Only In New Jersey?mentioning

confidence: 99%