An evaluation of health-related quality of life and its relation with functional vision in children with cerebral visual impairment.
In CVI, always collect both child and parent HRQOL ratings—kids rate their quality of life higher than parents do, and lower functional vision predicts lower HRQOL.
01Research in Context
What this study did
Greenlee et al. (2024) asked kids with cerebral visual impairment and their parents to fill out the same quality-of-life form.
They then checked how well the children’s vision worked in daily tasks.
The goal was to see if poorer vision went hand-in-hand with lower life-quality scores.
What they found
Most children scored in the at-risk range for health-related quality of life.
The children rated their own lives higher than their parents did for them.
Lower functional-vision scores predicted lower quality-of-life scores.
How this fits with other research
Bathelt et al. (2019) saw the same negative pattern in kids with severe congenital vision loss, so the CVI result is not a one-off.
Longo et al. (2017) and Aza et al. (2024) also found that children with cerebral palsy rate their quality of life higher than their parents do; L et al. extend this mismatch to CVI.
Chezan et al. (2019) and Caçola et al. (2018) showed large HRQOL drops in developmental coordination disorder, hinting that parent–child gaps may be common across neuro-developmental disorders, not just CVI.
Why it matters
Always collect both child and parent HRQOL ratings during CVI assessments. The child’s view gives credit for coping strategies parents may miss, while the parent view flags real-world barriers. Pair the data with a quick functional-vision checklist; if vision scores dip, plan extra supports at school and home to protect life quality.
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02At a glance
03Original abstract
BACKGROUND: Health-related Quality of Life (HRQOL) and its relation with functional vision is understudied in cerebral visual impairment (CVI). AIMS: Characterising HRQOL, comparing child self- and parent proxy-reports, and exploring relations with functional vision. METHODS AND PROCEDURES: Seventy-three children with CVI (n females = 33; n males = 40; Mean performance age = 7y2m) were included. HRQOL was measured with Pediatric Quality of Life Inventory (PedsQL) child self- and parent proxy-reports and compared using Wilcoxon signed-rank tests. Risk for impaired HRQOL was evaluated using cut-off scores. Parents scored functional vision using the Insight Questions Inventory and the Flemish CVI Questionnaire. OUTCOMES AND RESULTS: 61 % (self-reported) or 66 % of children (proxy-reported) were at-risk for impaired total HRQOL. Ratings were correlated (rs = 0.305; p = 0.013); however, children rated higher total HRQOL compared to parent-proxy (r = 0.382; p = 0.002). The Insight Questions Inventory and the PedsQL proxy-report were correlated (rp = -0.454; p < 0.001), the Flemish CVI Questionnaire was negligibly correlated (rp = -0.244; p = 0.041). CONCLUSIONS AND IMPLICATIONS: HRQOL is reduced in CVI, and both child and parent perspectives are crucial. HRQOL and functional vision are intricately related, and impairment in one negatively affects the other.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104861