Research Article

Association between Participants’ Characteristics, Patient-Reported Outcomes, and Clinical Outcomes in Youth with Sickle Cell Disease

Table 2

Participants’ characteristics and PROMIS® quality of life domain scores.

PROMIS® Domains, median (IQR)AgeGenderChronic Pain
12–17 years18-22 yearsPMaleFemalePYesNoP

Fatigue46.2 (35; 57.1)60.7 (51; 62.6)0.0845.3 (39.1; 54.1)57.1 (48.8; 62)0.1161.5 (60.9; 62)49 (39.9; 60)0.17
Pain 49.2 (32.2; 59)54.3 (51; 60.4)0.3450.1 (42; 59)52.2 (32.2; 57.5)0.567.5 (65.5; 69.5)49.9 (39.1; 57.7)0.04
PF - UE50.2 (45.3; 57.2)56.4 (44.2; 56.4)0.8950.7 (49.1; 57.2)46.5 (44.3; 56.4)0.1533.3 (25.8; 40.8)50.7 (46.4; 56.4)0.05
PF - mobility46.2 (41.3; 53.1)44.1 (41.8; 54.1)0.9647.6 (43.8; 55.8)43.5 (36.4; 47.3)0.0335.45 (27.6; 43.3)46.2 (42.9; 53.1)0.09
Anxiety41.5 (32.4; 50.2)57.3 (46.9; 61)0.0647.2 (36.9; 55.4)41 (36.9; 59.7)0.9762.1 (60.9; 63.3)42.3 (36.9; 55.4)0.05
Depression37.5 (31.9; 47.9)62.1 (34.6; 63.1)0.1440.9 (34.6; 47.9)42.3 (31.9; 62.2)0.8164.35 (62.2; 66.5)37.5 (34.2; 52.1)0.05

P-value < 0.05 was statistically significant and p-value of 0.05 was borderline significant (highlighted in bold).
All PROMIS® data were reported as T-scores.
IQR: interquartile range; PF: physical function; PROMIS: patient reported outcomes measurement information system; UE: upper extremities.
Chronic pain defined as daily pain for a minimum of 3 months and/or using long-acting narcotics (Morphine Sulphate Controlled Release or MS Contin) 2-3 times daily for a minimum of 3 months.
Higher PROMIS® scores indicated more severe or worse fatigue, pain interference, depression, or anxiety, while lower PROMIS® scores indicated more limited, impaired, or worse upper extremity physical function or mobility physical function.
We evaluated each PROMIS domain across patient groups separately with no adjustment for multiple testing.