Abstract
PurposeTo report piloting and initial validation of the VQoL_CYP, a novel age-appropriate vision-related quality of life (VQoL) instrument for self-reporting by children with visual impairment (VI).MethodsParticipants were a random patient sample of children with VI aged 10–15 years. 69 patients, drawn from patient databases at Great Ormond Street Hospital and Moorfields Eye Hospital, United Kingdom, participated in piloting of the draft 47-item VQoL instrument, which enabled preliminary item reduction. Subsequent administration of the instrument, alongside functional vision (FV) and generic health-related quality of life (HRQoL) self-report measures, to 101 children with VI comprising a nationally representative sample enabled further item reduction and evaluation of psychometric properties using Rasch analysis. Construct validity was assessed through Pearson correlation coefficients.ResultsItem reduction through piloting (8 items removed for skewness and individual item response pattern) and validation (1 item removed for skewness and 3 for misfit in Rasch) produced a 35-item scale, with fit values within acceptable limits, no notable differential item functioning, good measurement precision, ordered response categories and acceptable targeting in Rasch. The VQoL_CYP showed good construct validity, correlating strongly with HRQoL scores, moderately with FV scores but not with acuity.ConclusionsRobust child-appropriate self-report VQoL measures for children with VI are necessary for understanding the broader impacts of living with a visual disability, distinguishing these from limited functioning per se. Future planned use in larger patient samples will allow further psychometric development of the VQoL_CYP as an adjunct to objective outcomes assessment.
Highlights
The prevailing emphasis on patient-led assessment of the impact of disease and healthcare [1,2] has led to generic and disease-specific patient-reported outcome measures (PROMs) assessing health-related quality of life (HRQoL) in children [3,4]
Item reduction through piloting (8 items removed for skewness and individual item response pattern) and validation (1 item removed for skewness and 3 for misfit in Rasch) produced a 35-item scale, with fit values within acceptable limits, no notable differential item functioning, good measurement precision, ordered response categories and acceptable targeting in PLOS ONE | DOI:10.1371/journal.pone
Robust child-appropriate self-report vision-related quality of life (VQoL) measures for children with visual impairment (VI) are necessary for understanding the broader impacts of living with a visual disability, distinguishing these from limited functioning per se
Summary
The prevailing emphasis on patient-led assessment of the impact of disease and healthcare [1,2] has led to generic and disease-specific patient-reported outcome measures (PROMs) assessing health-related quality of life (HRQoL) in children [3,4]. Reliable and valid self-report PROMs, which are designed for use with children with visual impairment (VI) and which are grounded in their own perspectives of the impact of living with VI on quality of life (QoL) have been lacking [6]. This is not surprising given the absence of a conceptual framework and the scientific challenges of conducting research with a clinically complex and a numerically small population [7]. In keeping with the ‘self-discrepancy’ theory of QoL [10,11], we aimed to explore the feasibility of an instrument that formally captured the gap between the visually impaired child’s current experiences and expectations (Actual vs. Ideal Status)
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