Table 1.

Baseline demographic data and psychological characteristics

	Following VOE		Steady-state
	Median (IQR)	n	Median (IQR)	n
Age	16.5 (11–20)	10	16 (10–19)	9
Female sex, n (%)	6 (60%)	10	6 (60%)	9
Quality of life: PedsQL™ Generic QoL inventory (total score)**	68 (54.85–75)	10	73.9 (63.04–80.43	9
SCD-specific quality of life: PedsQL™ SCD module (total score)**	49.12 (41.86–63.41)	10	62.2 (53.5–70.93)	9
Pain Catastrophizing Scale
Total score	30 (24–31)	10	24 (19–29.5)	8
Rumination	12 (10–13)	10	12 (10.5–15)	8
Magnification	6.5 (3–7)	10	4.5 (3–6.5)	8
Helplessness	10.5 (8–11)	10	7 (4.5–10)	8
PROMIS measures (T-score)
Pain intensity*	51.1 (49.4–58.3)	10	43.2 (36.8–51.7)	8
Pain interference^	59.1 (52.7–63.2)	10	51.4 (49.5–56.05)	8
Anxiety	45.05 (43.9–58.4)	10	44.75 (39.95–46.85)	8
Depression	51.5 (46–56.2)	10	47.35 (45.05–51.5)	8
Sleep disturbance^	56.5 (53.3–60)	10	48.35 (46.4–51.15)	8
Fatigue^	59.3 (55.3–63)	10	49.25 (41.75–54.1)	8

Notes:

^{^}0.05<p<0.1.

^*p<0.05.

^**p<0.01 (Wilcoxon signed-rank test used participants with data at two time points).

Abbreviations: SCD, sickle cell disease; VOE, vaso-occlusive episodes; IQR, interquartile range; PROMIS, Patient Reported Outcomes Measurement Information System.