Table I.

Included PROMs

		Materials evaluated in this study				Previous validation research
PROM	Assessed construct	Items or subscales included	Number of items evaluated	Format	Evaluated materials	Age of participants in validation study	Functional abilities of participants in validation studies
PROMIS UE-CAT28	‘Activities that require use of the upper extremity including shoulder, arm, and hand activities’30	Full item bank	28	Computer, all 4 available formats	Online demo Online administration instructions	5–17	Individuals were excluded for medical or psychiatric conditions and/or other impairments (including cognitive) that would prevent PROM completion.
PROMIS UE-SF29		Full assessment (short form represents items from the full CAT item bank)	8	Paper/pencil form	Paper/pencil short form Online administration instructions		No information was provided about participants’ IQ, literacy, or cognitive functioning.
TRAQ31	Readiness for healthcare transition	Full assessment	20	Paper/pencil form	Paper/pencil form Online administration instructions	14–26	Participants had the following conditions: -80% ‘activity limiting physical condition’ (e.g. cerebral palsy, deafness, diabetes with no cognitive impairment) -9% ‘cognitive impairment’ (autism, mild intellectual disability) -11% ‘mental health condition’ (e.g. learning disabilities, behavioral disorders, ADHD) -No information was provided about participants’ IQ or literacy skills.
LIFE-H 14+32, 33	Social participation	Diet, eating meals, meal preparation, personal care, elimination, dressing, healthcare, and household maintenance subscales	68	Paper/pencil form	Paper/pencil form Published manual	14+	-Both young people and adults participated in the validation study; the percentage of young people completing the LIFE-H 14+ as a PROM is not reported. -23% of the sample, including young people and adults had an intellectual disability. -No information was provided about participants’ IQ or literacy skills.
PACS34	Occupational performance and engagement	Personal care subscale	12	Card sort	Full assessment (card sort) Published manual	5–14	No information was provided about participants’ IQ, literacy, or cognitive functioning.
PEGS35	Perceived competence in everyday activities	Self-care subscale	7	Card sort	Full assessment (card sort) Published manual	Chronologically or developmentally 6–9	-Inclusion criteria were receptive language skills equal to or greater than those of a 5 year old and the ability to make choices between two options. -Some participants had a diagnosis of ‘global delay,’ but no information is provided about their IQ, literacy, or cognitive functioning.
QYPP36, 37	‘Participation frequency across multiple domains’	Home life subscale	5	Paper/pencil form	Paper/pencil form Development papers (dissertation, published manuscript)	13–21	-All participants had a diagnosis of cerebral palsy; 69% had some form of learning ‘difficulty,’ including 36% with ‘severe’ learning difficulty. -50% of participants had communication impairments. -No information was provided about participants’ IQ or literacy skills.

PROM, Patient Reported Outcome Measure; ICF-CY, International Classification of Functioning – Children and Youth; PROMIS UE-CAT, Patient Reported Outcomes Measurement Information System Upper Extremity – Computer Adaptive Test; PROMIS UE-SF, Patient Reported Outcomes Measurement Information System Upper Extremity – Short Form; TRAQ, Transition Readiness Assessment Questionnaire; LIFE-H 14+, Life Habits Questionnaire for ages 14+; PACS, Pediatric Activity Card Sort; PEGS, Perceived Efficacy and Goal Setting System; QYPP, Questionnaire of Young People’s Participation.