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Volumn 28, Issue 3, 2007, Pages 342-354

Respiratory support for the severely handicapped child with neuromuscular disease: Ethics and practicality

Author keywords

Decision making; Duchenne muscular dystrophy; Noninvasive ventilation; Palliative care; Spinal muscular atrophy; Tracheostomy ventilation

Indexed keywords

ASSISTED VENTILATION; CHILD CARE; HANDICAPPED CHILD; HOME CARE; HUMAN; MEDICAL DECISION MAKING; MEDICAL ETHICS; MUSCLE FUNCTION; NEUROMUSCULAR DISEASE; PALLIATIVE THERAPY; PRIORITY JOURNAL; QUALITY OF LIFE; REVIEW; SCORING SYSTEM; SURVIVAL;

EID: 34250856324     PISSN: 10693424     EISSN: None     Source Type: Journal    
DOI: 10.1055/s-2007-981655     Document Type: Review
Times cited : (41)

References (40)
  • 1
    • 0344687355 scopus 로고    scopus 로고
    • Ventilatory support in congenital neuromuscular disorders: Congenital myopathies, congenital muscular dystrophies, congenital myotonic dystrophy and SMA II
    • Wallgren-Petterson C, Bushby K, Mellies U, Simonds AK. Ventilatory support in congenital neuromuscular disorders: congenital myopathies, congenital muscular dystrophies, congenital myotonic dystrophy and SMA II. Neuromuscul Disord 2004;14:56-69
    • (2004) Neuromuscul Disord , vol.14 , pp. 56-69
    • Wallgren-Petterson, C.1    Bushby, K.2    Mellies, U.3    Simonds, A.K.4
  • 2
    • 0036344202 scopus 로고    scopus 로고
    • Patterns and predictors of sleep disordered breathing in primary myopathies
    • Ragette R, Mellies U, Schwake C, Voit T, Teschler H. Patterns and predictors of sleep disordered breathing in primary myopathies. Thorax 2002;57:724-728
    • (2002) Thorax , vol.57 , pp. 724-728
    • Ragette, R.1    Mellies, U.2    Schwake, C.3    Voit, T.4    Teschler, H.5
  • 3
    • 0036298102 scopus 로고    scopus 로고
    • Normal values for maximal inspiratory and expiratory pressures in healthy children
    • Tomalak W, Pogorzelski A, Prusak J. Normal values for maximal inspiratory and expiratory pressures in healthy children. Pediatr Pulmonol 2002;34:42-46
    • (2002) Pediatr Pulmonol , vol.34 , pp. 42-46
    • Tomalak, W.1    Pogorzelski, A.2    Prusak, J.3
  • 6
    • 0347480491 scopus 로고    scopus 로고
    • The Duchenne muscular dystrophy population in Denmark, 1977-2001: Prevalence, incidence and survival in relation to the introduction of ventilator use
    • Jeppesen J, Green A, Steffensen BF, Rahbek J. The Duchenne muscular dystrophy population in Denmark, 1977-2001: prevalence, incidence and survival in relation to the introduction of ventilator use. Neuromuscul Disord 2003;13:804-812
    • (2003) Neuromuscul Disord , vol.13 , pp. 804-812
    • Jeppesen, J.1    Green, A.2    Steffensen, B.F.3    Rahbek, J.4
  • 7
    • 0025317772 scopus 로고    scopus 로고
    • Baydur A, Gilgoff I, Prentice W, Carlson M, Fischer DA. Decline in respiratory function and experience with long term assisted ventilation in advanced Duchenne's muscular dystrophy. Chest 1990;97:884-889
    • Baydur A, Gilgoff I, Prentice W, Carlson M, Fischer DA. Decline in respiratory function and experience with long term assisted ventilation in advanced Duchenne's muscular dystrophy. Chest 1990;97:884-889
  • 9
    • 14844318046 scopus 로고    scopus 로고
    • Effect of perindopril on the onset and progression of left ventricular dysfunction in Duchenne muscular dystrophy
    • Duboc D, Meaune C, Lerebours G, Devaux J-Y, Vaksmann G, Becane H-M. Effect of perindopril on the onset and progression of left ventricular dysfunction in Duchenne muscular dystrophy. J Am Coll Cardiol 2005;45: 855-857
    • (2005) J Am Coll Cardiol , vol.45 , pp. 855-857
    • Duboc, D.1    Meaune, C.2    Lerebours, G.3    Devaux, J.-Y.4    Vaksmann, G.5    Becane, H.-M.6
  • 10
    • 0002428443 scopus 로고
    • Disorders of the lower motor neurone: The spinal muscular atrophies
    • V Dubowitz, ed, London: WB Saunders;
    • Dubowitz V. Disorders of the lower motor neurone: the spinal muscular atrophies. In: V Dubowitz, ed. Muscle Disorders in Childhood. London: WB Saunders; 1995: 325-367
    • (1995) Muscle Disorders in Childhood , pp. 325-367
    • Dubowitz, V.1
  • 11
    • 16644394038 scopus 로고    scopus 로고
    • Spinal muscular atrophy: Survival pattern and functional status
    • Chung BHY, Wong VCN, Ip P. Spinal muscular atrophy: survival pattern and functional status. Pediatrics 2004;114: e548-e553
    • (2004) Pediatrics , vol.114
    • Chung, B.H.Y.1    Wong, V.C.N.2    Ip, P.3
  • 12
    • 0036480355 scopus 로고    scopus 로고
    • Functional independence measure (WeeFIM) for Chinese children: Hong Kong cohort
    • Wong V, Wong S, Chan K, Wong W. Functional independence measure (WeeFIM) for Chinese children: Hong Kong cohort. Pediatrics 2002;109:e36
    • (2002) Pediatrics , vol.109
    • Wong, V.1    Wong, S.2    Chan, K.3    Wong, W.4
  • 13
    • 0029162659 scopus 로고
    • Indicators of need for mechanical ventilation in Duchenne muscular dystrophy and spinal muscular atrophy
    • Lyager S, Steffensen B, Juhl B. Indicators of need for mechanical ventilation in Duchenne muscular dystrophy and spinal muscular atrophy. Chest 1995;108:779-785
    • (1995) Chest , vol.108 , pp. 779-785
    • Lyager, S.1    Steffensen, B.2    Juhl, B.3
  • 14
    • 0028067907 scopus 로고
    • The natural history of type I (severe) spinal muscular atrophy
    • Thomas NH, Dubowitz V. The natural history of type I (severe) spinal muscular atrophy. Neuromuscul Disord 1994; 4:497-502
    • (1994) Neuromuscul Disord , vol.4 , pp. 497-502
    • Thomas, N.H.1    Dubowitz, V.2
  • 15
    • 0032791230 scopus 로고    scopus 로고
    • Consensus Conference. Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation: a Consensus conference report. Chest 1999;116:521-534
    • Consensus Conference. Clinical indications for noninvasive positive pressure ventilation in chronic respiratory failure due to restrictive lung disease, COPD, and nocturnal hypoventilation: a Consensus conference report. Chest 1999;116:521-534
  • 16
    • 0028291379 scopus 로고
    • Randomised trial of preventive nasal ventilation in Duchenne muscular dystrophy
    • Raphael J-C, Chevret S, Chastang C, Bouvet F. Randomised trial of preventive nasal ventilation in Duchenne muscular dystrophy. Lancet 1994;343:1600-1604
    • (1994) Lancet , vol.343 , pp. 1600-1604
    • Raphael, J.-C.1    Chevret, S.2    Chastang, C.3    Bouvet, F.4
  • 17
    • 26944453349 scopus 로고    scopus 로고
    • Randomised controlled trial of noninvasive ventilation (NIV) for nocturnal hypoventilation in neuromuscular and chest wall disease patients with daytime normocapnia
    • Ward S, Chatwin M, Heather S, Simonds AK. Randomised controlled trial of noninvasive ventilation (NIV) for nocturnal hypoventilation in neuromuscular and chest wall disease patients with daytime normocapnia. Thorax 2005;60:1019-1024
    • (2005) Thorax , vol.60 , pp. 1019-1024
    • Ward, S.1    Chatwin, M.2    Heather, S.3    Simonds, A.K.4
  • 18
    • 33646596611 scopus 로고    scopus 로고
    • Risk management of the home ventilator dependent patient
    • Simonds AK. Risk management of the home ventilator dependent patient. Thorax 2006;61:369-371
    • (2006) Thorax , vol.61 , pp. 369-371
    • Simonds, A.K.1
  • 19
    • 21744462394 scopus 로고    scopus 로고
    • Facial side effects during noninvasive ventilation in children
    • Fauroux B, Lavis J-F, Nicot F, et al. Facial side effects during noninvasive ventilation in children. Intensive Care Med 2005; 31:965-969
    • (2005) Intensive Care Med , vol.31 , pp. 965-969
    • Fauroux, B.1    Lavis, J.-F.2    Nicot, F.3
  • 21
    • 0842349451 scopus 로고    scopus 로고
    • Outcome of noninvasive positive pressure ventilation in paediatric neuromuscular disease
    • Katz S, Selvadurai H, Mitchell M, MacLuskey I. Outcome of noninvasive positive pressure ventilation in paediatric neuromuscular disease. Arch Dis Child 2004;89:121-124
    • (2004) Arch Dis Child , vol.89 , pp. 121-124
    • Katz, S.1    Selvadurai, H.2    Mitchell, M.3    MacLuskey, I.4
  • 22
    • 0842306289 scopus 로고    scopus 로고
    • Outcome of children with neuromuscular disease admitted to paediatric intensive care
    • Yates K, Festa M, Waters K, North K. Outcome of children with neuromuscular disease admitted to paediatric intensive care. Arch Dis Child 2004;89:170-175
    • (2004) Arch Dis Child , vol.89 , pp. 170-175
    • Yates, K.1    Festa, M.2    Waters, K.3    North, K.4
  • 23
    • 0033746324 scopus 로고    scopus 로고
    • Prevention of pulmonary morbidity for patients with neuromuscular disease
    • Tzeng AC, Bach JR. Prevention of pulmonary morbidity for patients with neuromuscular disease. Chest 2000;118:1390-1396
    • (2000) Chest , vol.118 , pp. 1390-1396
    • Tzeng, A.C.1    Bach, J.R.2
  • 24
    • 4544261945 scopus 로고    scopus 로고
    • Use of the mechanical in-exsufflator in pediatric patients with neuromuscular disease and impaired cough
    • Miske LJ, Hickey EH, Kolb SM, Weiner DJ, Panitch HB. Use of the mechanical in-exsufflator in pediatric patients with neuromuscular disease and impaired cough. Chest 2004;125: 1406-1412
    • (2004) Chest , vol.125 , pp. 1406-1412
    • Miske, L.J.1    Hickey, E.H.2    Kolb, S.M.3    Weiner, D.J.4    Panitch, H.B.5
  • 25
    • 33751294514 scopus 로고    scopus 로고
    • Diurnal ventilation via mouthpiece: Survival in end-stage Duchenne patients
    • Toussaint M, Steens M, Wasteels G, Soudon P. Diurnal ventilation via mouthpiece: survival in end-stage Duchenne patients. Eur Respir J 2006;28:549-555
    • (2006) Eur Respir J , vol.28 , pp. 549-555
    • Toussaint, M.1    Steens, M.2    Wasteels, G.3    Soudon, P.4
  • 26
    • 4544272373 scopus 로고    scopus 로고
    • Consensus statement: Respiratory care of the patient with Duchenne muscular dystrophy
    • American Thoracic Society
    • American Thoracic Society. Consensus statement: respiratory care of the patient with Duchenne muscular dystrophy. Am J Respir Crit Care Med 2004;170:456-465
    • (2004) Am J Respir Crit Care Med , vol.170 , pp. 456-465
  • 27
    • 20444469615 scopus 로고    scopus 로고
    • Patterns of home mechanical use in Europe: Results from the Eurovent survey
    • Lloyd-Owen SJ, Donaldson GC, Ambrosino N, et al. Patterns of home mechanical use in Europe: results from the Eurovent survey. Eur Respir J 2005;25:1025-1031
    • (2005) Eur Respir J , vol.25 , pp. 1025-1031
    • Lloyd-Owen, S.J.1    Donaldson, G.C.2    Ambrosino, N.3
  • 28
    • 4544350134 scopus 로고    scopus 로고
    • Respiratory capacity course in patients with infantile spinal muscular atrophy
    • Ioos C, Leclair-Richard D, Mrad S, Barois A, Estournet-Mathiaud B. Respiratory capacity course in patients with infantile spinal muscular atrophy. Chest 2004;126:831-837
    • (2004) Chest , vol.126 , pp. 831-837
    • Ioos, C.1    Leclair-Richard, D.2    Mrad, S.3    Barois, A.4    Estournet-Mathiaud, B.5
  • 29
    • 0032077081 scopus 로고    scopus 로고
    • Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding
    • Birnkrant DJ, Pope JF, Martin JE, Repucci AH, Eiben RM. Treatment of type I spinal muscular atrophy with noninvasive ventilation and gastrostomy feeding. Pediatr Neurol 1998;18: 407-410
    • (1998) Pediatr Neurol , vol.18 , pp. 407-410
    • Birnkrant, D.J.1    Pope, J.F.2    Martin, J.E.3    Repucci, A.H.4    Eiben, R.M.5
  • 30
    • 0034007507 scopus 로고    scopus 로고
    • Spinal muscular atrophy type I: A noninvasive respiratory management approach
    • Bach JR, Niranjan V, Weaver B. Spinal muscular atrophy type I: a noninvasive respiratory management approach. Chest 2000;117:1100-1105
    • (2000) Chest , vol.117 , pp. 1100-1105
    • Bach, J.R.1    Niranjan, V.2    Weaver, B.3
  • 33
    • 3142574829 scopus 로고    scopus 로고
    • Depression in parents of children with Duchenne muscular dystrophy
    • Daoud MS, Dooley JM, Gordon KE. Depression in parents of children with Duchenne muscular dystrophy. Pediatr Neurol 2004;31:16-19
    • (2004) Pediatr Neurol , vol.31 , pp. 16-19
    • Daoud, M.S.1    Dooley, J.M.2    Gordon, K.E.3
  • 35
    • 18844474412 scopus 로고    scopus 로고
    • Respiratory support in spinal muscular atrophy type I: A survey of physician practices and attitudes
    • Hardart MKM, Burns JP, Truog RD. Respiratory support in spinal muscular atrophy type I: a survey of physician practices and attitudes. Pediatrics 2002;110:e24
    • (2002) Pediatrics , vol.110
    • Hardart, M.K.M.1    Burns, J.P.2    Truog, R.D.3
  • 36
    • 0041348964 scopus 로고    scopus 로고
    • Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
    • Hardart GE, Truog RD. Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients. Crit Care Med 2003;31:1895-1900
    • (2003) Crit Care Med , vol.31 , pp. 1895-1900
    • Hardart, G.E.1    Truog, R.D.2
  • 37
    • 0035092299 scopus 로고    scopus 로고
    • Long-term ventilation for patients with Duchenne muscular dystrophy: Physicians' beliefs and practices
    • Gibson B. Long-term ventilation for patients with Duchenne muscular dystrophy: physicians' beliefs and practices. Chest 2001;119:940-946
    • (2001) Chest , vol.119 , pp. 940-946
    • Gibson, B.1
  • 38
    • 33750069741 scopus 로고    scopus 로고
    • Physicians' attitudes and practices of long-term noninvasive ventilation of children with Duchenne muscular dystrophy
    • Kinali M, Manzur AY, Gibson BE, Hartley L, Simonds AK, Muntoni FUK. Physicians' attitudes and practices of long-term noninvasive ventilation of children with Duchenne muscular dystrophy. Pediatr Rehabil 2006;9: 351-364
    • (2006) Pediatr Rehabil , vol.9 , pp. 351-364
    • Kinali, M.1    Manzur, A.Y.2    Gibson, B.E.3    Hartley, L.4    Simonds, A.K.5    Muntoni, F.U.K.6
  • 39
    • 0033846817 scopus 로고    scopus 로고
    • Long-term ventilator support in patients with Werdnig-Hoffman disease
    • Sakakihara Y, Kubota M, Kim S, Oka A. Long-term ventilator support in patients with Werdnig-Hoffman disease. Pediatr Int 2000;42:359-363
    • (2000) Pediatr Int , vol.42 , pp. 359-363
    • Sakakihara, Y.1    Kubota, M.2    Kim, S.3    Oka, A.4
  • 40
    • 0141859888 scopus 로고    scopus 로고
    • Spinal muscular atrophy type I: The challenge of defining the child's best interests
    • Hardart MKM, Truog RD. Spinal muscular atrophy type I: the challenge of defining the child's best interests. Arch Dis Child 2003;88:848-850
    • (2003) Arch Dis Child , vol.88 , pp. 848-850
    • Hardart, M.K.M.1    Truog, R.D.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.