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

被引：22

作者：

Lofaso, Frederic ^{[1
,2
,17
]}

Prigent, Helene ^{[1
,2
]}

Tiffreau, Vincent ^{[3
]}

Menoury, Nathalie ^{[4
]}

Toussaint, Michel ^{[5
]}

Monnier, Armelle Finet ^{[6
]}

Stremler, Natalie

Devaux, Christian ^{[7
]}

Leroux, Karl ^{[8
]}

Orlikowski, David ^{[1
,2
]}

Mauri, Cecile ^{[9
]}

Pin, Isabelle ^{[10
,11
]}

Sacconi, Sabrina ^{[12
]}

Pereira, Cecile ^{[13
]}

Pepin, Jean-Louis ^{[12
,13
,14
]}

Fauroux, Brigitte ^{[15
,16
]}

机构：

[1] Hop Raymond Poincare, AP HP, F-92380 Garches, France

[2] Hop Raymond Poincare, AP HP, Ctr Invest Clin & Innovat Technol, U805, F-92380 Garches, France

[3] CHRU Lille, Ctr Reference Malad Neuromusculaires, F-59037 Lille, France

[4] Maison Accueil Specialisee Yolaine Kepper, St Georges Sur Loire, France

[5] Inkendaal Rehabil Hosp, Ctr Home Mech Ventilat, Brussels, Belgium

[6] CHU Timone, AP HM, Ctr Reference Malad Neuromusculaires, Marseille, France

[7] Assoc Francaise Myopathies, Dept Act Med, Evry, France

[8] Assoc Entraide Polios & Handicapes Assistance, Suresnes, France

[9] Assoc Insert Grands Handicapes Resp & Moteurs, St Mathieu De Treviers, France

[10] CHU Grenoble, Pole Couple Enfants, F-38043 Grenoble, France

[11] CHU Grenoble, Pole Locomot Reeducat & Physiol, F-38043 Grenoble, France

[12] CHU Nice, Hop Archet 1, Ctr Reference Malad Neuromusculaires Sclerose Lat, F-06202 Nice, France

[13] CHU Nice, Ctr Competences Pneumol Malad Neuromusculaire, F-06202 Nice, France

[14] Univ Grenoble 1, Fac Med, Lab HP2, INSERM,U1042, Grenoble, France

[15] Univ Paris 06, Hop Armand Trousseau, AP HP, Ctr Reference Malad Resp Rares Pneumol Pediat, Paris, France

[16] Univ Paris 06, Hop Armand Trousseau, AP HP, INSERM,U955, Paris, France

[17] Hop Henri Mondor, INSERM, Equipe Biomecan Cellulaire & Resp, U955, F-94010 Creteil, France

来源：

RESPIRATORY CARE | 2014年 / 59卷 / 01期

关键词：

home care; masks; mouthpieces; myopathies; patient-centered care; respiratory failure; NONINVASIVE VENTILATION; PRESSURE SUPPORT; HUMIDIFICATION; LEAKS; EFFICIENCY; PASSOVER; EFFICACY;

D O I：

10.4187/respcare.02229

中图分类号：

R4 [临床医学];

学科分类号：

1002 ; 100602 ;

摘要：

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. (C) 2014 Daedalus Enterprises

引用

页码：97 / 106

页数：10

共 50 条

[31] Asynchronies and sleep disruption in neuromuscular patients under home noninvasive ventilation [J].

Crescimanno, Grazia ;

Canino, Maria ;

Marrone, Oreste .

RESPIRATORY MEDICINE, 2012, 106 (10) :1478-1485

[32] Long-Term Outcome after Prolonged Mechanical Ventilation A Long-Term Acute-Care Hospital Study [J].

Jubran, Amal ;

Grant, Brydon J. B. ;

Duffner, Lisa A. ;

Collins, Eileen G. ;

Lanuza, Dorothy M. ;

Hoffman, Leslie A. ;

Tobin, Martin J. .

AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, 2019, 199 (12) :1508-1516

[33] Preference of neuromuscular patients regarding equipment for daytime mouthpiece ventilation: A randomized crossover study [J].

Toussaint, Michel ;

Chatwin, Michelle ;

Verhulst, Stijn ;

Reychler, Gregory .

CLINICAL RESPIRATORY JOURNAL, 2020, 14 (03) :214-221

[34] Practical Guide to Management of Long-Term Noninvasive Ventilation for Adults With Chronic Neuromuscular Disease [J].

Hansen-Flaschen, John ;

Ackrivo, Jason .

RESPIRATORY CARE, 2023, 68 (08) :1123-1157

[35] Measuring Adherence to Long-Term Noninvasive Ventilation [J].

Chao, Caroline ;

Berlowitz, David J. ;

Howard, Mark E. ;

Rautela, Linda ;

McDonald, Luke A. ;

Hannan, Liam M. .

RESPIRATORY CARE, 2021, 66 (09) :1469-1476

[36] Outcome of COPD patients treated with long-term domiciliary non-invasive ventilation [J].

Thibout, Y. ;

Philit, F. ;

Freymond, N. ;

Petitjean, T. ;

Nesme, P. ;

Guerin, C. .

REVUE DES MALADIES RESPIRATOIRES, 2006, 23 (05) :438-444

[37] Quality of life in patients with slowly progressive neuromuscular disorders dependent on mechanical ventilation [J].

Delorme, Mathieu ;

Reveillere, Christian ;

Devaux, Christian ;

Segovia-Kueny, Sandrine ;

Lofaso, Frederic ;

Boussaid, Ghilas .

THORAX, 2023, 78 (01) :92-96

[38] When should home mechanical ventilation be started in patients with different neuromuscular disorders? [J].

Dreher, Michael ;

Rauter, Isabelle ;

Storre, Jan H. ;

Geiseler, Jens ;

Windisch, Wolfram .

RESPIROLOGY, 2007, 12 (05) :749-753

[39] Invasive and non-invasive long-term mechanical ventilation in Italian children [J].

Racca, F. ;

Bonati, M. ;

Del Sorbo, L. ;

Berta, G. ;

Sequi, M. ;

Capello, E. C. ;

Wolfler, A. ;

Salvo, I. ;

Bignamini, E. ;

Ottonello, G. ;

Cutrera, R. ;

Biban, P. ;

Benini, F. ;

Ranieri, V. M. .

MINERVA ANESTESIOLOGICA, 2011, 77 (09) :892-901

[40] The effects of long-term noninvasive ventilation in hypercapnic COPD patients: a randomized controlled pilot study [J].

De Backer, L. ;

Vos, W. ;

Dieriks, B. ;

Daems, D. ;

Verhulst, S. ;

Vinchurkar, S. ;

Ides, K. ;

De Backer, J. ;

Germonpre, P. ;

De Backer, W. .

INTERNATIONAL JOURNAL OF CHRONIC OBSTRUCTIVE PULMONARY DISEASE, 2011, 6 :615-624

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