Table 1.

Participant Demographics. As reported via survey by parent

Variable	All (n = 354)
Age (years)
Median (IQR)	23 (13–32)
Adults (> = 18 years)	235 (67.7%)
Children (< 18 years)	112 (32.3%)
Missing age = 7
Sex
Male	164 (46.5%)
Female	189 (53.5%)
Missing sex = 1
Patient Genotype
Severe SCD
Hb SS	230 (65.5%)
Hb S Beta Thalassemia-zero	5 (1.4%)
Mild SCD
Hb SC	111 (31.6%)
Hb S Beta Thalassemia-plus	3 (0.9%)
Other	2 (0.6%)
Missing genotype = 3
Age of SCD Diagnosis
0–6 months old	39 (11.0%)
7–11 months old	19 (5.4%)
1–2 years old	56 (15.8%)
3–4 years old	43 (12.2%)
5–10 years old	101 (28.5%)
11–14 years old	41 (11.6%)
15+ years old	55 (15.5%)
No missing data
Mechanism of SCD Diagnosis
“Blood test…”
For pain crisis
At the hospital/ER	169 (49.3%)
At the pediatrician’s office	57 (16.6%)
Because child in family had SCD	26 (7.6%)
At birth (newborn screen)	19 (5.5%)
For another illness (not pain crisis)	55 (16.0%)
Other	17 (5.0%)
Missing diagnosis mechanism = 11

Hb Hemoglobin

ER Emergency room

SCD Sickle cell disease