Table 6

Summary of the wave 1 patient-reported outcomes

CharacteristicNAll patients
n=830
AgeDiagnosisSeverity of illness
13–18 years
n=302
19–24 years
n=528
Haematology
n=373
Oncology
n=457
Least
n=461
Intermediate
n=194
Most
n=175
PedsQL, mean (SD)
 Total score82966.20 (19.79)64.14 (18.53)67.39 (20.40)64.59 (18.28)67.52 (20.86)70.67 (18.86)61.55 (19.77)59.57 (19.25)
 Physical summary score82859.45 (27.72)54.67 (26.75)62.20 (27.91)56.96 (25.04)61.47 (29.58)67.65 (25.49)52.67 (26.63)45.33 (26.95)
 Psychosocial summary score80.38 (18.45)77.88 (18.27)81.82 (18.42)79.37 (18.49)81.21 (18.41)84.15 (16.75)75.90 (19.82)75.43 (18.98)
 Emotional summary score67.64 (22.76)70.94 (21.83)65.75 (23.07)67.75 (21.68)67.55 (23.62)68.05 (23.09)64.92 (23.15)69.57 (21.21)
EQ-5D, mean (SD) total score8300.76 (0.24)0.75 (0.23)0.77 (0.24)0.77 (0.22)0.76 (0.25)0.81 (0.21)0.71 (0.26)0.71 (0.24)
 median (IQR)0.80 (0.69–1)0.80 (0.62–1)0.81 (0.69–1)0.80 (0.69–1)0.80 (0.66–1)0.85 (0.73–1)0.73 (0.62–1)0.75 (0.59–0.88)
HADS, mean (SD)*830
 Anxiety score6.89 (4.39)6.14 (4.12)7.32 (4.49)6.79 (4.36)6.98 (4.43)7.23 (4.55)7.01 (4.44)6.14 (3.83)
  Borderline n (%)160 (19)51 (17)109 (21)75 (20)85 (19)82 (18)44 (23)34 (19)
  Moderate/severe n (%)172 (21)48 (16)124 (23)70 (19)102 (22)106 (23)40 (21)26 (15)
 Depression score4.62 (3.68)4.45 (3.38)4.71 (3.84)4.84 (3.57)4.43 (3.76)4.31 (3.65)5.16 (3.79)4.81 (3.57)
  Borderline n (%)120 (15)40 (13)80 (15)48 (13)72 (16)48 (10)40 (21)32 (18)
  Moderate/severe n (%)55 (7)16 (5)39 (7)26 (7)29 (6)32 (7)14 (7)9 (5)
MSPSS, median (IQR)
 Total support8201.50 (1.08–2.25)1.58 (1.17–2.33)1.50 (1–2.08)1.58 (1.08–2.25)1.42 (1.08–2.17)1.50 (1.08–2.25)1.58 (1–2.25)1.50 (1.17–2.08)
 Support – friends8277 (4–11)7 (4–12)6 (4–10)7 (4–11)6 (4–10)7 (4–10)7 (4–12)7 (4–10)
 Support – family8275 (4–8)5 (4–8)5 (4–8)5 (4–8)5 (4–8)5 (4–8)5 (4–8)4 (4–7)
 Support – significant others8234 (4–8)5 (4–9)4 (4–8)4 (4–8)4 (4–8)4 (4–8)4 (4–9)4 (4–7)
BIPS, median (IQR)830
 Consequences7 (4–8)7 (5–8)7 (4–8)7 (5–8)6 (4–8)6 (4–8)7 (5–8)7 (6–9)
 Personal control6 (4–8)6 (5–8)5 (3–8)6 (4–8)6 (4–8)6 (3–8)6 (4–8)6 (3–8)
 Treatment control10 (9–10)10 (9–10)10 (8–10)10 (9–10)10 (8–10)10 (9–10)10 (9–10)10 (8–10)
 Identity5 (3–7)6 (3–8)5 (3–7)6 (4–7)5 (2–7)5 (3–7)6 (3–8)6 (4–8)
 Coherence8 (7–10)9 (7–0)8 (7–10)8 (7–10)8 (7–10)8 (7–10)8 (7–10)9 (7–10)
 Emotional representation6 (4–8)5 (3–7)7 (4–8)6 (4–8)6 (4–8)6 (4–8)6 (4–8)6 (3–8)
 Concern6 (3–8)5 (3–7)7 (4–8)6 (3–8)6 (4–8)6 (3–8)6 (4–8)6 (3–8)
Satisfaction with care, n (%)820
 Excellent/good777 (95)284 (95)493 (95)358 (96)419 (94)433 (95)173 (91)171 (99)
 Fair/poor/very poor43 (5)16 (5)27 (5)15 (4)28 (6)23 (5)18 (9)2 (1)
  • *Borderline=8–10, moderate/severe=>11.51

  • BIPS, Brief Illness Perception Scale; EQ-5D, EuroQol 5-Dimension; HADS, Hospital Anxiety and Depression Scale; MSPSS, Multi-dimensional Scale of Perceived Social Support; PedsQL, Pediatric Quality of Life Questionnaire.