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Fatigue NRS Fatigue
Sleep
NRS Sleep /
PROMIS SF Sleep
Disturbance*
NRS Fatigue /
PROMIS CAT -
Fatigue*
NRS Sleep /
PROMIS CAT- Sleep
Disturbance*
NRS Fatigue /
PROMIS CAT -
Fatigue*
NRS Sleep /
PROMIS CAT- Sleep
Disturbance*
NRS Fatigue /
PROMIS CAT -
Fatigue*
NRS Fatigue /
PROMIS CAT –
Fatigue*
PROMIS CAT - Sleep
Disturbance
PROMIS CAT - Sleep
Disturbance
Pain NRS Pain NRS Pain NRS Pain NRS Pain NRS Pain
Hearing No suitable PROM AIADH (1 item) AIADH (1 item) AIADH (1 item) AIADH (1 item)
Vision No suitable PROM FVQ-CYP (1 item) FVQ-CYP (1 item) Health Monitor CBS
(1 item)
Gastro-intestinal
symptoms
PROMIS Scale –
Gastrointestinal
Nausea and Vomiting,
PROMIS Scale –
Gastrointestinal
Constipation,
PROMIS Scale –
Gastrointestinal Belly
Pain, PROMIS Scale
– Gastrointestinal
Reflux, PROMIS Scale
– Gastrointestinal
Gas and Bloating (6
items)
PROMIS Scale –
Gastrointestinal
Nausea and Vomiting,
PROMIS Scale –
Gastrointestinal
Constipation,
PROMIS Scale –
Gastrointestinal Belly
Pain, PROMIS Scale
– Gastrointestinal
Reflux, PROMIS Scale
– Gastrointestinal
Gas and Bloating (6
items)
PROMIS Scale –
Gastrointestinal
Nausea and Vomiting,
PROMIS Scale –
Gastrointestinal
Constipation,
PROMIS Scale –
Gastrointestinal Belly
Pain, PROMIS Scale
– Gastrointestinal
Reflux, PROMIS Scale
– Gastrointestinal
Gas and Bloating (6
items)
PROMIS Scale –
Gastrointestinal
Nausea and Vomiting,
PROMIS Scale –
Gastrointestinal
Constipation,
PROMIS Scale –
Gastrointestinal Belly
Pain, PROMIS Scale
– Gastrointestinal
Reflux, PROMIS Scale
– Gastrointestinal
Gas and Bloating (6
items)
Health Monitor CBS
(1 item)
PROMIS Scale –
Gastrointestinal
Nausea and Vomiting,
PROMIS Scale –
Gastrointestinal
Constipation,
PROMIS Scale –
Gastrointestinal Belly
Pain, PROMIS Scale
– Gastrointestinal
Reflux, PROMIS Scale
– Gastrointestinal
Gas and Bloating (6
items)
PRO, patient reported outcome; NRS, Numeric Rating Scale, PROM, patient reported outcome measure; PROMIS, Patient-Reported Outcomes Measurement
Information System; CAT, Computerized Adaptive Testing; SF, Short Form; AIADH, Amsterdam Inventory for Auditory and Disability Handicap; FVQ-CYP,
Functional Vision Questionnaire for Children and Young People; CBS, Central Bureau of Statistics.
*For the PROs fatigue and sleep (children only), both a NRS and a PROMIS CAT were psychometrically tested. The NRS aligns with the Dutch generic PROM
set for these domains and may be used as a screening tool in care, while the PROMIS CAT is better suited for research purposes.
8
General discussion
