Table 3 Details of study flow and duration of each interventions period

Participant given PIS

x

Inclusion/Exclusion reviewed

x

x

Consent signed

x

Daytime oximetry

x

x

x

Overnight oximeter issued

x

Oximeter collected

x

Spirometry

x

x

x

Lung volume testing (adults)

x

x

x

Quality of life evaluation

x

x

x

Blood tests/urine tests

x

x

x

Smartphone issued

x

Daily pain diary for next week

x

x

x

x

Intervention 1 commenced

x

Sleep physiologist to review participant at home to set up intervention 1, review participant and adverse events

x

Intervention 1 stopped (courier to pick up)

x

Intervention 2 commenced

x

Sleep physiologist to review participant at home to set up intervention 2, review participant and adverse events

x

Intervention 2 stopped (courier to pick up)

x

Qualitative interview with participant and parent/guardian

x

x

Medical/nursing review of compliance and adverse event reporting

x

x