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Variables n (%) Gender Male 32 (72.7) Female 12 (27.3) Credential Consultant 20 (45.5) Other physicians* 15 (34) Respiratory therapist 9 (20) Hospital setting Tertiary 37 (84) Secondary 7 (16) Type of hospital Governmental 40 (90) Private 4 (10) Includes fellows, specialists & residents
- Table 2
Comparison of statements from “Consensus Statement for Standard of Care in Spinal Muscular Atrophy”8 to the surveyed participants’ responses toward different respiratory support statements for SMA type I.
Consensus statement Recommendation Statement asked in the survey Consultants Others Disagree Neutral Agreed Disagree Neutral Agreed n (%) “If noninvasive ventilation fails, nonsitters may be intubated and mechanically ventilated as a short-term measure” “In acute exacerbation, endotracheal intubation is acceptable for SMA type I patients” 9 (45) 4 (20) 7 (35) 7 (29) 5 (21) 12 (50) “If noninvasive ventilation was needed during an acute illness, home noninvasive ventilatory support should be considered.” “Chronic home Ventilation is acceptable for SMA type I patients” 8 (40) 4 (20) 8 (40) 8 (33) 6 (25) 10(42) “In nonsitters with frequent respiratory infections, tracheotomy and ventilation can be considered but may not improve quality of life or decrease hospitalizations” “Treating team should offer tracheostomy for SMA type I patients” 12 (60) 3(15) 5 (25) 9 (37) 3 (13) 12 (50) “In nonsitters, care without ventilation support is an option if the burden of management outweighs benefit. Noninvasive ventilation may be used palliatively to facilitate hospital discharge and reduce work of breathing.” “Will you consider withholding Mechanical Ventilation from SMA type I patients?” 8 (40) -------- 12 (60) 16 (67) -------- 8 (33)
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