Table 4.

Crosscutting themes

Domain	Themes
Pain	Severity and frequency of pain episodes
	Level of concern about unpredictability of pain episodes
	Limiting activity to prevent painful episodes
	Extent to which painful episodes limit daily activities
	Fear of having pain episodes
	Control of pain
Fatigue	Extent to which fatigue interferes with school/work
	Extent to which fatigue limits daily activities
	Extent to which the disease interrupts sleep
Emotion	Extent to which disease affects mood causing anger, anxiety and fear
Disease symptoms & treatment	Extent to which disease and treatment limit activities
	Extent to which treatment affects my health
Social/communication	Extent to which disease and treatment affect peer relationships
	Extent to which disease and treatment affect relationships with healthcare providers