Table 2 Characteristics of the included PROMs
PROM (reference to first article) | Construct(s) | Target population | Mode of administration | Recall period | (Sub)scale(s) (number of items) | Response options | Range of scores/scoring | Original language | Available translations* |
|---|---|---|---|---|---|---|---|---|---|
ABILHAND-Kids [33] | Manual ability | Children with cerebral palsy (> 6 yr) | Parent/proxy-report | 3 months | 1 scale (21 items) | 3-level Likert rating scale | 0–42 (raw sum score) | French/English | Ukrainian, Danish, Turkish, Arabic, Persian |
ChARM [36] | Upper limb activity limitation | Children with cerebral palsy (5-16Â yr) | Parent/proxy-report | Â | 1 scale (19 items) | Individual items have a differing number of response options | Â | English | Â |
CHEQ [34] | Perceived problems with bimanual activities | Children with unilateral dysfunction (6-18 yr) | Parent/proxy- or self-report with assistance from parents/caregivers (for children ≤ 12 yr) Self-report (for children > 12 yr) |  | 3 scales (29 items) | 4-category rating scale |  | English |  |
CHQ [50] | Health-related quality of life | Children and adolescents (5-18 yr) | Parent/proxy-report Self-report | Varies: ‘last 4 weeks’, ‘in general’ | 10 physical and psychosocial concepts (not reported for this CHQ-version) | 4–6 level rating scale | Scores at concept-level Summary score (parent-reported version only) | English |  |
CHSQ [38] | Manual ability | Children with disabilities (2-12Â yr) | Parent/proxy-report | 3Â months | 3 domains (21 items) | 3-level Likert rating scale | Â | English | Turkish |
DHI [43] | Functional disability | Adults with disabilities | Self-report |  | 1 scale that can be subdivided into 3 ‘factors’ (18 items) | 5-point Likert rating scale | 0–90 | English |  |
HUH [35] | The amount of spontaneous useof the affected hand | Children with unilateralupper limb paresis (3-10 yr) | Parent/proxy-report |  | 1 scale (18 items) | 5-point rating scale | Sum score (range 0–36) or Hand-Use-at-Home score in logits (interval scale, range − 4.69–5.17) | English |  |
IMAL [51] | Caregiver perception of upper limb-use during daily activities | Children with neurological and functional impairments (< 2 yr) | Parent/proxy-report |  | 2 subscales (20 items) | 5-point Likert rating scale |  | English |  |
PEDI self-care domain [52] | Ability to perform self-care activities | Children with physical disabilities | Parent/proxy-report |  | Self-care domain (7 items) | 0–100 |  | English |  |
PODCI [53] | Perceived limitations | Children with musculoskeletal disorders | Parent/proxy-report Self-report |  | 5 subscales, 1 total score (114 items) | 0–100 | 0–100 (normalized score) | English |  |
PODCI (v2.0) [25] | Perceived limitations | Children with musculoskeletal disorders | Parent/proxy-report (for children 2-10 yr) Self-report (for children 11-18 yr) |  | 5 subscales, 1 total score (83/86 items) | 0–100 | 0–100 (standardized score) | English | Dutch |
PROMIS – Upper Extremity item bank (short form) [56] | Upper extremity function | The general population and children or adults living with chronic conditions | Parent/proxy-report Self-report | 7-day recall period | 1 scale (8 items) | 5-point Likert rating scale | 0–100 (normalized T-scores) | English |  |
PROMIS Upper Extremity item bank (CAT) [56] | Upper extremity function | The general population and children or adults living with chronic conditions | Self-report | 7-day recall period | 1 scale (min 5 items, max 12 items) | 5-point Likert rating scale | 0–100 (normalized T-scores) | English |  |
QuickDASH [57] | Upper extremity function | Adult patients with disabilities of the shoulder, arm, and/or hand | Self-report |  | 1 scale (11 items) | 5-point Likert rating scale | 0–100 (summative scale) | English |  |
Revised PMAL [39] | Upper limb-use in real-life situations | Children with cerebral palsy (6mo-8 yr) | Parent/proxy-report |  | 2 subscales (number of items in revised PMAL unknown) | 3-level Likert rating scale | 0–2 per question (collapsed rating scale) | English |  |