Table 3.

Causes and frequency of SMA-related appointment cancellations and/or delays during pandemic

Type of appointment cancellation or delay	Provider impact surveya				Community impact surveyb (n = 2047) % (n)
	At any time during pandemic		Month prior to survey completion
	Care-and-trial sites (n = 26) % (n)	Care sites (n = 22) % (n)	Care-and-trial sites (n = 26) % (n)	Care sites (n = 22) % (n)
Clinic/facility cancelled or delayed appointment for SMA-related care	69.2% (18)	59.1% (13)	26.9% (7)	4.5% (1)	42.5% (870)
Clinic/facility cancelled or delayed appointment for SMA drug treatment	26.9% (7)	27.3% (6)	11.5% (3)	9.1% (2)	22.6% (463)
Clinic/facility cancelled or delayed appointment for an SMA-related service (e.g., physical therapy)	80.8% (21)	72.7% (16)	38.5% (10)	18.2% (4)	42.9% (878)
Patient and/or family cancelled or delayed SMA-related appointments due to exposure concerns	95.2% (25)	86.4% (19)	65.4% (17)	63.6% (14)	n/a
Changes or limitations in accessing essential SMA-related services (e.g., physical therapy, in-home health care)	n/a	n/a	n/a	n/a	55.3% (1131)
It was a personal choice to cancel or delay any SMA-related appointment for care or treatment	n/a	n/a	n/a	n/a	34.7% (711)
None of the above	n/a	n/a	n/a	n/a	27.8% (569)

^aThe Provider Impact Survey was launched on November 24, 2020 and closed on March 8, 2021

^bThe first Community Impact Survey launched on April 7, 2020 and closed on November 18, 2020 with 1642 unique responses. The second Community Impact Survey launched on July 29, 2020 and remained open at data cut (July 16, 2021) with 442 unique responses. The third Community Impact Survey launched on November 18, 2020 and remained open at data cut (July 16, 2021) with 1026 unique responses