Table 1.
Characteristics of included ophthalmic patient-reported outcome measures for pediatric patients with vision impairment
| PROMs | Country and year of publication(s) | Original or reviseda | Number of items (age range, respondent) | Number (%) of patients with IRD in sample | Purpose/construct | Subscale(s)/domain(s) |
|---|---|---|---|---|---|---|
| Children’s Visual Function Questionnaire (CVFQ) [14, 15] | USA, 2004–2007 | Original | 35 (0–3 years, self-report); 40 (3–7 years, self-report) | 29*/403 (7%) for pilot testing [14]; 58*/397 (15%) in < 3 years and 80*/376 (21%) in ≥ 3 years for validation [14]; 0*/194 were IRD for further validation [15] | To measure vision-specific QoL in children with VI | General health; general vision; competence; personality; family impact; treatment |
| Cardiff Visual Ability Questionnaire for Children (CVAQC) [16] | UK, 2010 | Original | 25 (5–18 years, self-report) | Not given | To assess VA in children and young people VI | Education; near vision; distance vision; getting around; social interaction; entertainment; sports |
| Impact of Visual Impairment for Children (IVI_C) [17, 18] | Australia, 2008–2011 | Original | 23 (8–18 years, self-report) | Not given | To measure the effect of impaired vision on QoL in children with VI | No subscale(s) reported |
| Pediatric Eye Questionnaires (PedEyeQ) [20–24] | USA, 2017–2021 | Original | 40 (5–11 years, self-report); 39 (12–17 years, self-report); 29 (0–4 years, parent-proxy); 39 (5–11 years, parent-proxy); 42 (12–17 years, parent-proxy); 35 (parent self-report) | 12**/124 (9.6%) in 0–4 years (parent-proxy), 12**/117 (10.3%) in 5–11 years (self-report and parent-proxy), 13**/87 (14.9%) in 12–17 years (self-report and parent-proxy) for content development [20]; 55*/444 (12.4%) in 0–17 years (self-report and parent-proxy) for pilot testing [21]; 5/45 (11.1%) in 0–4 years (parent-proxy), 5/40 (12.5%) in 5–11 years (self-report and parent-proxy), 3/22 (13.4%) in 12–17 years (self-report and parent-proxy) for validation [22] | To assess eye-related quality of life in VI children | (5–11 years and 12–17 years, self-report): functional vision; bothered by eyes/vision; social; frustration/worry (0–4 years, parent-proxy): functional vision; bothered by eyes/vision; social (5–11 years and 12–17 years, parent-proxy): functional vision; bothered by eyes/vision; social; frustration/worry; eye care (parent self-report): impact on parent/family; worry regarding child’s eye condition; worry regarding child’s self-perception and interactions; worry regarding child’s visual function |
| Vision-related Quality of Life of Children (VQoL_C) and Vision-related Quality of Life of Children (VQoL_YP) [29] | UK, 2011–2021 | Revised | 20 (8–12 years, self-report); 22 (13–17 years, self-report) | 7*/12 (75%) in 7–9 years, 12*/17 (70.6%) in 16–19 years for content development [29]; 8*/12 (66.7%) in 7–10 years, 9*/16 (56.3%) in 13–18 years for pretesting [29]; 15*/26 (57.7%) in 8–12 years, 18*/23 (78.3%) in 13–17 years for pilot testing [29]; 56*/87 (64.4%) in 7–13 years, 50*/73 (68.5%) in 13–18 years for validation [29] | To measure vision-specific QoL in children with VI | No subscale(s) reported |
| Functional Vision Questionnaire for Children (FVQ_C) and Functional Vision Questionnaire for Young People (FYQ_YP) [32] | UK, 2011–2021 | Revised | 28 (8–12 years, self-report); 38 (13–18 years, self-report) | 9*/12 (75%) in 6–9 years, 12*/17 (70.6%) in 16–19 years for content development [32]; 8*/12 (66.7%) in 7–10 years, 9*/16 (56.3%) in 13–18 years for pretesting [32]; 71*/113 (62.8%) in 7–13 years, 68*/96 (70.8%) in 13–18 years for pilot testing and validation [32] | To assess the functional impact of VI on activities of daily living in children and young people | No subscale(s) reported |
PROM patient-reported outcome measure, QoL quality of life, VI vision impairment
* = IRD + retinal disease; ** = IRD + retinal disease + optic neuropathy
aRevised = New edition of PROM released since initial validation