Table 6 Responsiveness analysis results using Wilcoxon rank sum test for matched pairs

Self-report version (n = 71)

 Item1 Pain

2.4(1.9)

2(0–4)

1.9(1.7)

1(0–3)

1.4(1.7)

1(0–3)

1.3(1.6)

0(0–2)

 < 0.001*

0.055

0.4452

0.0001*

 Item2 other body problems

2.1(1.8)

2(0–4)

1.7(1.8)

1(0–3)

1.5(1.7)

1(0–3)

1.5(1.8)

1(0–3)

0.008*

0.065

0.963

0.011*

 Item 3 Feeding

2.5(2.0)

3(0–5)

2.3(1.9)

2(0–4)

2.3(2.2)

2(0–5)

2.3(2.2)

2(0–5)

0.402

0.887

0.3652

0.417

 Item 4 Cried

0.7(1.4)

0(0–1)

2.1(1.6)

2(1–3)

0.6(1.2)

0(0–1)

0.6(1.5)

0(0–0)

0.855

0.433

0.786

0.224

 Item 5 felt happy

1.6(1.7)

1(0–3)

1.6(1.8)

1(0–3)

1.3(1.6)

1(0–3)

1.3(1.6)

0.5(0–2)

0.150

0.142

0.884

0.217

 Item 6 playing

2.2(2.2)

2(0–5)

2.0(2.1)

1(0–5)

1.6(2.2)

0(0–3)

1.9(2.5)

0(0–3)

0.007*

0.073

0.861

0.130

 Item 7 questions answered

1.7(1.9)

1(0–3)

1.6(1.9)

1(0–3)

1.5(2.2)

0(0–3)

1.6(2.4)

0(0–3)

0.112

0.191

0.897

0.631

Proxy version (n = 159)

 Item1 Pain

2.1(1.8)

2(0–3)

1.3(1.6)

1(0–3)

1.4(1.7)

1(0–3)

1.3(1.7)

0(0–3)

 < 0.001*

0.2089

0.3550

< 0.001*

 Item2 other body problems

2.6(1.9)

3(1–4)

2.0(1.7)

2(0–3)

1.6(1.7)

1(0–3)

1.5(1.6)

1(0–3)

 < 0.001*

0.005*

0.1987

< 0.001*

 Item 3 Feeding

2.7(2.0)

3(0–5)

2.7(2.0)

3(0–5)

2.8(2.0)

3(0–5)

2.8(2.1)

3(0–5)

0.402

0.678

0.5237

0.459

 Item 4 Cried

2.1(1.6)

2(1–3)

1.0(1.7)

0(0–2)

1.6(1.6)

1(0–3)

1.3(1.5)

1(0–2)

0.001*

0.4186

0.001*

0.001*

 Item 5 felt happy

2.4(1.9)

3(0–4)

2.2(1.9)

3(0–4)

1.9(1.8)

2(0–3)

1.7(1.8)

1(0–3)

0.001*

0.032

0.0602

0.001*

 Item 6 playing

2.3(2.0)

2(0–5)

2.3(1.9)

2(0–4)

2.1(2.0)

2(0–4)

1.7(2.0)

1(0–3)

0.062

0.148

0.001*

0.001*

 Item7 questions answered

2.7(1.9)

3(1–5)

2.3(1.9)

3(0–4)

2.1(2.0)

2(0–4)

2.4(2.4)

2(0–4)

0.002*

0.1458

0.901

< 0.001*

Family (n = 293)

 Item 8 worry(n = 293)

3(2.1)

3(1–5)

2.8(2.0)

3(1–5)

2.9(1.8)

3(2–5)

2.7(2.0)

3(1–5)

 Item 9 Shared own feelings (n = 272)

1.5(1.9)

0(0–3)

1.5(1.9)

1(0–3)

1.5(1.9)

0(0–2)

1.1(1.8)

0(0–2)

0.030*

0.014*

< 0.001*

< 0.001*

 Item 10 Received adequate information (n = 294)

1.6(1.8)

1(0–3)

1.4(1.7)

1(0–2)

1.4(1.7)

1(0–2)

1.2(1.7)

0(0–2)

< 0.001*

0.066

0.006*

< 0.001*

 Item 11 Received enough help and advice (n = 290)

2.2(2)

2(0–5)

1.9(1.8)

2(0–3)

1.9(1.9)

1(0–3.5)

1.8(1.8)

1(0–3)

0.001*

0.272

0.0006

< 0.001*

 Item 12 Family confidence (n = 268)

0.9(1.6)

0(0–1)

0.8(1.4)

0(0–1)

0.6(1.2)

0(0–1)

0.5(1.1)

0(0–1)

0.001*

0.023*

0.004*

0.001*