Table 5.

Pediatric sickle cell disease individual in-depth interviews

Domain	Pediatric patient with sickle cell disease
Pain	5–7-year-olds, 8–12-year-olds and 13–18-year-olds
	Most reported they experience pain symptoms recurrently
	Most reported unpredictability and recurrent nature of painful episodes made planning activities difficult
	Some report they often have excruciating pain
	Some reported limiting their activities to try and prevent painful episodes from occurring
	8–12-year-olds and 13–18-year-olds
	Most report they worry they will have a painful episode
Fatigue	5–7-year-olds, 8–12-year-olds and 13–18-year-olds
	Most report feeling fatigued and having low energy
	Many report feeling winded or short of breath
	8–12-year-olds and 13–18-year-olds
	Most report being tired at school or work
	Some report fatigue limits what they are able to do
	Most report pain interrupts their sleep or makes it difficult to sleep
Emotion	5–7-year-olds, 8–12-year-olds and 13–18-year-olds
	Many report they worry they will have to go to the hospital
	8–12-year-olds and 13–18-year-olds
	Some report being angry when others do not understand their disease
	Some report they have fear that others do not understand their sickle cell disease
	Some report being angry they have sickle cell disease
	Some report they worry about getting complications of sickle cell disease
	Some report they worry about their disease getting worse
Disease symptoms and treatment	5–7-year-olds, 8–12-year-olds and 13–18-year-olds
	Most report they limit themselves from doing activities to try and prevent painful episodes from occurring
	Most report they cannot do what others can due to their disease
	Some report they find it difficult to remember to take their medications
	8–12-year-olds and 13–18-year-olds
	Some report their medications make them feel fatigued
	Some report their medications do not work to make them feel better
	Some report they do not like having to take medications
	Some report they have yellow eyes from their disease
	13–18-year-olds
	Some report they have difficulty caring for themselves when they are sick
Social/communication	5–7-year-olds, 8–12-year-olds and 13–18-year-olds
	Most report the unpredictability of the disease prevents them from doing things they want and need to do
	8–12-year-olds and 13–18-year-olds
	Most report they wanted to be treated the same as others
	Most report they want to be alone when sick
	Some report they do not fit in with their peers and they get bullied by others
	Some report they get used to experiencing illness and pain from their disease and learn to cope in their own way
	Some report healthcare providers do not always listen to them
	Some report they wish their family, friends and healthcare providers understood their disease better
	Some report that others think they are faking their symptoms sometimes