Table 4.

Parent/carer version of PROM and PREM questionnaires

Parent/carer version of PROM and PREM questionnaires (children aged <11 years)
Completed by:	Mother		Father		Other (relationship to child)
	□		□		□
PROM: To be completed prior to seeing the doctor
Patient outcome	Never		Sometimes		Often		Most of the time
Question 1: Physical well-being
Over the past month, how often has each of the following interfered with your child’s daily activities?
Fatigue (having very little energy)	□		□		□		□
Pain	□		□		□		□
Poor sleep	□		□		□		□
Medication (side effects)	□		□		□		□
Question 2: Social well-being	□		□		□		□
Over the last month, how often has your child’s condition interfere with the things your child likes to do (e.g. playing sport, going to the park, playing out, socialising with friends).
Question 3: Emotional well-being	□		□		□		□
Over the last month, how often has your child felt sad/worried or frustrated?
PREM: To be completed after seeing the doctor
Patient experience		Not at all	A bit		Mostly		Fully
Question 1: During today’s hospital visit, were your/your child’s questions and concerns listened to and answered in a way that you/your child could understand?		□	□		□		□
Question 2: How well do you and your child understand your child’s treatment plan?		□	□		□		□
Question 3: How well supported do you and your child feel in between hospital visits?		□	□		□		□
Question 4: Was the environment in which you waited today suitable for you/your child and your family (those attending the appointment)		□	□		□		□
Patient experience		No unacceptable delays	Unacceptable delay
			<15 min	15–30 min	30 min to 1 h	1–2 h		>2 h
Question 5: From your appointment time today did you experience a delay you felt unacceptable and if so by how long?		□	□	□	□	□		□