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Table 6 Participants’ perceptions of sickle cell disease and hydroxyurea in relation to their health-related quality of life using PROMIS® measures

From: Adherence to hydroxyurea, health-related quality of life domains, and patients’ perceptions of sickle cell disease and hydroxyurea: a cross-sectional study in adolescents and young adults

B-IPQ domains

Fatigue (N = 31)

Pain interference (N = 31)

PF-UE

(N = 31)

PF-Mobility (N = 31)

Anxiety (N = 31)

Depression (N = 31)

Peer relationships (N = 23)

Social Isolation (N = 8)

Consequences

0.68 (<0.001)

0.56 (<0.01)

0.32 (0.08)

0.59 (<0.001)

0.55 (<0.01)

0.64 (<0.001)

0.1 (0.64)

0.55 (0.15)

Personal control

0.28 (0.13)

0.51 (<0.01)

0.2 (0.28)

0.2 (0.27)

0.27 (0.14)

0.3 (0.1)

0.02 (0.94)

0.61 (0.1)

Treatment control

0.6 (<0.001)

−0.39 (0.03)

0.36 (0.04)

0.59 (<0.001)

0.47 (<0.01)

0.62 (<0.001)

0.17 (0.43)

0.81 (0.01)

Identity (symptoms)

0.56 (<0.01)

0.48 (<0.01)

0.39 (0.03)

0.52 (<0.01)

0.31 (0.09)

0.34 (0.06)

0.07 (0.76)

0.32 (0.44)

Concerns

0.44 (0.01)

0.54 (<0.01)

0.35 (0.06)

0.35 (0.05)

0.58 (<0.001)

0.49 (<0.01)

0.21 (0.33)

0.82 (0.01)

Understanding

0.23 (0.21)

0.3 (0.11)

0.1 (0.59)

0.1 (0.6)

0.13 (0.5)

0.004 (0.99)

0.18 (0.42)

0.08 (0.85)

Emotional response

0.74 (<0.001)

0.63 (<0.001)

0.37 (0.04)

0.6 (<0.001)

0.56 (<0.01)

0.7 (<0.001)

0.13 (0.55)

0.74 (0.03)

  1. Data are presented as spearman correlations and p-values in parentheses (p-value)
  2. P-value <0.05 was statistically significant (highlighted in bold)
  3. B-IPQ brief illness perception questionnaire; IQR inter-quartile range; PF physical function; PROMIS® Patient Reported Outcomes Information System; UE Upper Extremity
  4. Note: Adolescent patients (12–17 years old) completed peer relationships PROMIS® measure (n = 23), while young adults (≥ 18 years old) completed social isolation PROMIS® measure (n = 8)
  5. Higher PROMIS® domain scores indicated worse severity for fatigue, pain interference, depression, anxiety, and social isolation, but better physical functioning (mobility or upper-extremity), and peer relationships
  6. Higher B-IPQ scores indicated worse perceptions of sickle cell disease related consequences, identity or disease-related symptoms, concerns, and emotional response, but better perceptions of personal control, treatment control, and understanding of sickle cell disease