Long-term ventilation of patients with Duchenne muscular dystrophy: Experiences at the Neuromuscular Centre Ulm

Acta Myologica

Volumn 31, Issue 3, 2012, Pages 170-178

  Wollinsky, Kurt H ^a   Kutter, Bernd ^a   Geiger, Peter M ^a  

^a Intensive Care Medicine and Pain Therapy   (Germany)

Author keywords

Duchenne muscular dystrophy; Increased survival; Non invasive ventilation; Respiratory failure

Indexed keywords

BETA ADRENERGIC RECEPTOR BLOCKING AGENT; CORTICOSTEROID; DIGITALIS; DIPEPTIDYL CARBOXYPEPTIDASE INHIBITOR;

ANALGESIA; ARTICLE; ASSISTED VENTILATION; BREATHING EXERCISE; CORTICOSTEROID THERAPY; DUCHENNE MUSCULAR DYSTROPHY; DYSPHAGIA; EXPERIENCE; EXPIRATORY MUSCULATURE; FEEDING DISORDER; GENERAL PRACTITIONER; GERMANY; HOME CARE; HOSPITAL; HUMAN; INSPIRATORY MUSCULATURE; LUNG VENTILATION; MEDICAL ASSISTANT; MUSCLE; MUSCLE WEAKNESS; NONINVASIVE VENTILATION; NUTRITION; PATIENT CARE; PRACTICE GUIDELINE; QUALITY OF LIFE; RESPIRATION CENTER; RESPIRATORY CARE; RESPIRATORY FAILURE; SCOLIOSIS; SELF HELP; TRACHEOSTOMY; VENTILATOR; ENTERIC FEEDING; INCREASED SURVIVAL; NON-INVASIVE VENTILATION; POSITIVE END EXPIRATORY PRESSURE;

DUCHENNE MUSCULAR DYSTROPHY; INCREASED SURVIVAL; NON-INVASIVE VENTILATION; RESPIRATORY FAILURE;

CONTINUOUS POSITIVE AIRWAY PRESSURE; ENTERAL NUTRITION; GERMANY; HUMANS; MUSCULAR DYSTROPHY, DUCHENNE; PULMONARY VENTILATION; QUALITY OF LIFE; RESPIRATORY INSUFFICIENCY;

MLCS; MLOWN;

EID: 84879399461     PISSN: 11282460     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (59)

1. Bockelbrink A. Häusliche Langzeitbeatmung: beeindruckender Erfolg und gute Resonanz. Therapiewoche 1991;41:1792-7.
2. Curran FJ. Night ventilation by body respirators for patients in chronic respiratory failure due to late stage Duchenne muscular dystrophy. Arch Phys Med Rehabil 1981;62:270-74.
3. Siegel IM. Pulmonary problems in Duchenne muscular dystrophy. Diagnosis, prophylaxis, and treatment. Phys Ther 1975;55:60-2.
4. Rideau Y, Glorion CB, Duport G. Prolongation of ambulation in the muscular dystrophies. Acta Neurol (Napoli) 1983;5:390-7.
5. Rideau Y, Glorion CB, Delaubier A, et al. The treatment of scoliosis in Duchenne muscular dystrophy. Muscle Nerve 1984;7:281-6.
6. Rideau Y, Delaubier A, Guillou C, et al. Treatment of respiratory insufficiency in Duchenne's muscular dystrophy: nasal ventilation in the initial stages. Monaldi Arch Chest Dis 1995;50:235-8.
7. Nigra G, Comi LI, Politano L, et al. The incidence and evolution of cardiomyopathy in Duchenne muscular dystrophy. Int J Cardiol 1990;26; 271-7.
8. Sullivan CE, Issa FG, Berthon-Jones M, et al. Reversal of obstructive sleep apnea by continuous positive airway pressure applied through the nares. Lancet 1981;1:862-5.
9. ATS Consensus Statement. Respiratory care of the patient with Duchenne muscular dystrophy. Am J Resp Crit Care Med 2004;4:456-65.
10. Bach JR, Alba A, Mosher R, et al. Intermittent positive pressure ventilation via nasal access in the management of respiratory insufficiency. Chest 1987;92:168-70.
11. Curran FJ, Colbert AP. Ventilator management in Duchenne muscular dystrophy and poliomyelitis syndrome: twelve years' experience. Arch Phys Med Rehabil 1989;70:180-5.
12. Forst R, Kronchen-Kaufmann A, Forst J. Duchenne muscular dystrophy - contracture preventive operations of the lower extremities with special reference to anesthesiologic aspects. Klin Paediatr 1991;203:24-7.
13. Wollinsky KH, Weiss C, Gelowicz-Maurer, et al. Preoperative risk assessment of children with Duchenne's muscular dystrophy and relevance for anesthesia and intra- and postoperative course. Med Klin Munich 1996;91(Suppl 2):34-7.
14. Raphael JC, Chevret S, Chastang C, et al. Randomized trial of preventive nasal ventilation in Duchenne Muscular dystrophy. French Multicentre Cooperative Group on Home Mechanical Ventilation Assistance in Duchenne de Boulogne Muscular Dystrophy. Lancet 1994;343:1600-4.
15. Gozal D, Thiriet P. Respiratory muscle training in neuromuscular disease: longterm effects on strength and load perception. Med Sci Sports Exerc 1999;31:1522-7.
16. Dohna-Schwake C, Ragette R, Teschler H. IPPB-assisted coughing in neuromuscular disorders. Pediatr Pulmonol 2006;41:551-7.
17. Wanke T, Toifi K, Merkle M, et al. Inspiratory muscle training on respiratory muscle function in patients with Duchenne muscular atrophy. Chest 1994;105:475-82.
18. Matsumura T, Saito T, Fujimura H, et al. Lung insufflation training using a positive end-expiratory pressure valve in neuromuscular disorders. Intern Med 2012;51:711-6.
19. McKim DA, Katz SL, Barrowman N, et al. Lung volume recruitment slows pulmonary function decline in Duchenne muscular dystrophy. Arch Phys Med Rehabil 2012;93:117-22.
20. Finder JD, Birnkraut D, Carl J, et al. Respiratory care of the patient with Duchenne muscular dystrophy: an official ATS consensus statement. Am J Respir Crit Care Med 2004;4:456-65.
21. Touissaint M, Soudon P, Kinnear W. Effect of non-invasive ventilation on respiratory muscle loading and endurance in patients with Duchenne muscular dystrophy. Thorax 2008;63:430-4.
22. Mindé A J C J. Entwicklung der individuellen Maske zur nächtlichen nasalen Beatmung und ihr Einsatz bei Patienten mit chronischer respiratorischer Insuffizienz. Dissertation, Ulm University 1995.
23. Li KK, Riley RW, Guilleminault C. An unreported risk in the use of nasal continuous positive airway pressure and home nasal ventilation in children. Chest 2000;117:916-8.
24. Schonhofer B, Sortor-Leger S. Equipment needs for noninvasive mechanical ventilation. Europ Resp J 2002;20:1029-36.
25. Schonhofer B. Choice of ventilator types, modes and settings for long-term ventilation. Respir Care Clin N Am 2002;8:419-45.
26. Rideau Y, Gatin G, Bach J, et al. Prolongation of life in Duchenne's muscular dystrophy. Acta Neurol 1983;5:118-24.
27. Simonds AK, Muntoni F, Heather S, et al. Impact of nasal ventilation on survival in hypercapnic Duchenne muscular dystrophy. Thorax 1998;53:949-52.
28. Vianello A, Bevilacqua M, Salvador V, et al. Long-term nasal intermittent positive pressure ventilation in advanced Duchenne's muscular dystrophy. Chest 1994;105:445-8.
29. Van Kesteren RG, Kampelmacher MJ. Mechanical ventilation in neuromuscular diseases: do not start too early, but certainly not too late. Ned Tijdschr Geneeskd 2000;144:1249-52.
30. Soudon P. Long term mechanical ventilation in neuromuscular disease: a medical, psychological and financial approach. Acta Cardiomyol 1991;2:165-82.
31. Lyager S, Steffenson B, Juhl B. Indicators of need for mechanical ventilation in Duchenne muscular dystrophy and spinal muscular atrophy. Chest 1995;108:916-8.
32. Baydur A, Gilgoff I, Prentice W, et al. Decline in respiratory function and experience with long-term assisted ventilation in advanced Duchenne's muscular dystrophy. Chest 1990;97:884-9.
33. Eagle M, Baudouin SV, Chandler C, et al. Survival in Duchenne muscular dystrophy: improvements in life expectance since 1967 and the impact of home ventilation. Neuromusc Disord 2002;12:026-9.
34. Windisch W, Brambring J, Budweiser S, et al. Non-Invasive and Invasive Mechanical Ventilation for Treatment of Chronic Respiratory failure. S2 Guidelines by the German Medical Association of Pneumology and Ventilatory Support. Pneumologie 2010;64:207-40.
35. Randerath WJ, Kamps N, Brambring J, et al. Recommendations for Invasive Home Mechanical Ventilation. Pneumologie 2011;65:72-88.
36. Parker AE, Robb SA, Chambers J, et al. Analysis of an adult Duchenne muscular dystrophy population. QJM 2005;98:729-36.
37. Kohler M, Clarenbach CF, Boni L. Quality of life, physical disabilityy, and respiratory impairment in Duchenne muscular dystrophy. Am J Resp Crit Care Med 2005;172:1032-6.
38. Bach JR, Bianchi C, Finder J, et al. Tracheostomy tubes are not needed for Duchenne muscular dystrophy. Europ Resp J 2007;30:179-80.
39. Soudon P, Steens M, Toussaint M. A comparison of invasive versus noninvasive full-time mechanical ventilation in Duchenne muscular dystrophy. Chron Resp Dis 2008;5:87-93.
40. Rideau Y. Requiem. Acta Myologica 2012;31:48-60.
41. Carrey Z, Gottfreid SB, Levy RD. Ventilatory muscle support in respiratory failure with nasal positive pressure ventilation. Chest 1990;97:150-8.
42. Hahn A, Duisberg B, Neubauer BA, et al. Noninvasive determination of the extension-time index in Duchenne muscular dystrophy. Am J Phys Med Rehab 2009;88:322-7.
43. Bach JR. Mechanical insufflation-exsufflation: a comparison of - peak exspiratory flows with manually assisted and unassisted coughing techniques. Chest 1993;104:1553-62.
44. Ishikawa Y, Bach JR. Duchenne muscular dystrophy. Letter to the editor: Thorax 1999, 54:564
45. Crescimanno G, Marrone O. High frequency chest wall oscillation plus mechanical in-exsufflation in Duchenne muscular dystrophy with respiratory complications related to pandemic Influenza A/H1N1. Rev Port Pneumol 2010;16:912-6.
46. Bach JR, Gonzalez M, Sharma A. Open gastrostomy for non-invasive ventilation users with neuromuscular disease. Am J Phys Med Rehabil 2010;89:1-6.
47. Bushby K, Finkel R, Birnkraut DJ, et al. Diagnosis and management of Duchenne muscular dystrophy. Part 2: Implementation of multidisciplinary care. Lancet Neurol 2010;9:177-89.
48. Sejerson T, Bushby K. Standards of Care for Duchenne Muscular dystrophy: brief Treat-NMD recommendations. Adv Exp Med boil 2009;652:13-21.
49. Birnkraut DJ, Panitch HB, Benditt JO, et al. American College of Chest Physicians consensus statement on the respiratory and related management of patients with Duchenne muscular dystrophy undergoing anesthesia or sedation. Chest 2007;132:1977-86.
50. Passamano L, Taglia A, Palladino A, et al. Improvement of survival in Duchenne Muscular Dystrophy: retrospective analysis of 835 patients. Acta Myol 2012;31:121-5.
51. Politano L, Nigro G. Treatment of dystrophinopathic cardiomyopathy: review of the literature and personal results. Acta Myologica 2012;31:24-30.
52. Viollet L, Trush PT, Flanigan KM, et al. Effects of angiotensinconverting enzyme inhibitors and-or betablockers on the cardiomyopathy in Duchenne muscular dystrophy. Am J Cardiol 2012;110:98-102.
53. Ogata H, Ishikawa Y, Ishikawa Y, et al. Beneficial effects of betablockers and angiogensin-converting enzyme inhibitors in Duchenne muscular dystrophy. J Cardiol 2009;53:72-8.
54. Erhard AC. Langzeiteffekt der nichtinvasiven Heimbeatmung bei chronisch respiratorischer Insuffizienz infolge neuromuskulärer Erkrankung. Dissertation, Ulm University 2002.
55. Bach JR, Martinez D. Duchenne muscular dystrophy: continuous non-invasive ventilatory support prolongs survival. Respir Care 2011;56:744-50.
56. Meinesz AF, Bladder G, Goorhuis JF, et al. 18 Years experience with mechanical ventilation in patients with Duchenne muscular dystrophy. Ned Tijdschr Geneeskd 2007;151:1830-3.
57. Ishikawa Y, Miura T, Ishikawa Y, et al. Duchenne muscular Dystrophy: survival by cardio-respiratory interventions. Neuromusc Disorders 2011;21:47-51.
58. Henschke C. Provision and financing of assistive technology devices in Germany: a bureaucratic odysee? The case of amyotrophic lateral sclerosis and Duchenne muscular dystrophy. Health Policy 2012;105:176-84.
59. Geiseler J, Karg O, Borger S, et al. Invasive Heimbeatmung insbesondere bei neuromuskularen Erkrankungen. Schriftenreihe Health Technology Assessment (HTA) in der Bundesrepublik Deutschland. 2010; Bd.103. HTA Bericht der Deutschen Agentur fur HTA des Deutschen Instituts fur Medizinische Dokumentation und Information (DIMDI) Koln.