Table 2.

Ehlers Danlos syndrome (EDS) Survey Question Responses

				Parent			Patient
Participant responses	Parent (n = 72) Yes n (%)	Patient (n = 72) Yes n (%)	Not comfortable n (%)	Somewhat Comfortable n (%)	Very comfortable n (%)	Not comfortable n (%)	Somewhat comfortable n (%)	Very comfortable n (%)
Hearing about EDS prior to diagnosis
Have you heard of EDS	41 (57)	42 (57)
Heard about EDS from Medical text	6 (8)	8 (11)
Heard about EDS from Nonmedical text	1 (1)	3 (4)
Heard about EDS from another parent or patient	8 (11)	16 (22)
Heard about EDS from social media	7 (10)	13 (18)
Heard about EDS through personal history	11 (15)	13 (18)
Comfort with EDS knowledge
Understanding the disease			4 (6)	48 (67)	20 (27)	6 (8)	35 (49)	31 (43)
Barriers that prevent comfort with EDS knowledge
Lack of educational materials	31 (42)	24 (32)
Lack of knowledge	35 (47)	42 (57)
Lack of confidence with diagnosis	7 (10)	10 (14)
Lack of confidence with provider knowledge	31 (42)	14 (19)
Lack of time in appointment	6 (8)	9 (12)
Comfort with EDS symptoms
Managing EDS symptoms			5 (7)	52 (72)	15 (21)	9 (12)	46 (62)	17 (23)
Barriers that prevent comfort with EDS symptoms
Lack of educational materials	28 (38)	24 (32)
Lack of knowledge	25 (34)	27 (37)
Lack of confidence with symptoms	21 (28)	23 (31)
Lack of confidence with provider knowledge	33 (45)	13 (18)
Lack of time in appointment	5 (7)	3 (4)
Symptom management was not discussed	4 (5)	5 (7)
Uncertainty about what symptoms are EDS-related	38 (51)	24 (32)
Education about EDS after diagnosis
Given educational materials	43 (58)	57 (77)

Not comfortable includes “not at all and not very” categories

Very comfortable includes “very and completely” categories