Table 4 Sleep T-scores before and after HCL commencement at 6 and 12 months

Patients (aged > 8 years)

PROMIS-Sleep-Related Impairment T-score

56.6 ± 9.1

54.9 ± 9.3

1.7 (0.3 to 3.0)

P = 0.017

Parent/carers

PROMIS-Parent Proxy Sleep Disturbance T-score

60.1 ± 10.4

56.1 ± 10.5

4.0 (2.2 to 5.6)

P < 0.001

PROMIS scores

Before HCL

12 months after HCL

Difference (95% confidence interval

P-value

Patients (aged > 8 years)

PROMIS-Sleep-Related Impairment T-score

56.6 ± 9.1

53.1 ± 10.8

3.5 (1.9 to 5.8)

P < 0.001

Parent/carers

PROMIS-Parent Proxy Sleep Disturbance T-score

60.1 ± 10.4

54.1 ± 10.5

6.0 (3.1 to 7.9)

P = 0.002