Development of an instrument to assess vision-related quality of life in young children

Felius, Joost; Berry, Priscilla M.; Fawcett, Sherry L.; Stager, David R.; Salomão, Solange Rios; Berezovsky, Adriana; Birch, Eileen E.

doi:10.1016/j.ajo.2004.05.010

Cited by 91 publications

(100 citation statements)

References 15 publications

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“…Examination of visual function appropriately age adjusted for relevant activities and reporting skills (34,35) can help expand the utility of quality of life measures. Multiple domains are necessary to capture all aspects of such a disease.…”

Section: Discussionmentioning

confidence: 99%

Proposed outcome measures for prospective clinical trials in juvenile idiopathic arthritis–associated uveitis: A consensus effort from the multinational interdisciplinary working group for uveitis in childhood

Heiligenhaus

Foeldvari

Edelsten

et al. 2012

Arthritis Care & Research

101

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Objective. To develop a set of core outcome measures for use in randomized controlled trials (RCTs) and longitudinal observational studies in juvenile idiopathic arthritis (JIA)-associated uveitis. Methods. The literature relating to outcome measures used in studies of uveitis in childhood and adolescence was reviewed. A set of core outcomes and domains was established using the Delphi process. This was reviewed by a representative multinational interdisciplinary working group. Nominal group technique consensus was reached on face and content validity of the range and content of the domains. The outcomes and the appropriate instruments for uveitis trials were adapted to the age ranges of patients with JIA-associated uveitis. Results. Consensus was reached that data should be reported at defined time points in longitudinal studies with patients stratified by prognostic markers. Visual acuity testing should be age appropriate. The severity of uveitis (measured as anterior chamber cell grade) and duration of active inflammation should be documented. Visually significant structural complications should be recorded and quantified with standard measures. The responses to treatment and corticosteroidsparing effects of treatment should be documented. Patient-reported disease activity and age-specific uveitis-related quality of life should be reported using appropriate questionnaires. Conclusion. The proposed outcome measures in JIA-associated uveitis should aid in the standardization and comparison of future RCTs of the treatment regimens for this disease. The proposed outcome measures will be verified in a prospective validation study.

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Section: Discussionmentioning

confidence: 99%

Proposed outcome measures for prospective clinical trials in juvenile idiopathic arthritis–associated uveitis: A consensus effort from the multinational interdisciplinary working group for uveitis in childhood

Heiligenhaus

Foeldvari

Edelsten

et al. 2012

Arthritis Care & Research

101

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“…[56][57][58] Visual ability and QOL measures that assess the impact of vision loss in children have been examined in a variety of pediatric eye diseases, with most designed to evaluate children between 8 and 18 years of age. [59][60][61][62][63] Using the review process developed by the REiNS Patient-Reported Outcomes Subcommittee (see Wolters et al, this supplement), we reviewed the available pediatric questionnaires. Of these, 2 examined visual ability rather than visionspecific QOL.…”

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confidence: 99%

Functional outcome measures for NF1-associated optic pathway glioma clinical trials

et al. 2013

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Objective: The goal of the Response Evaluation in Neurofibromatosis and Schwannomatosis Visual Outcomes Committee is to define the best functional outcome measures for future neurofibromatosis type 1 (NF1)-associated optic pathway glioma (OPG) clinical trials. Methods:The committee considered the components of vision, other ophthalmologic parameters affected by OPG, potential biomarkers of visual function, and quality of life measures to arrive at consensus-based, evidence-driven recommendations for objective and measurable functional endpoints for OPG trials.Results: Visual acuity (VA) assessments using consistent quantitative testing methods are recommended as the main functional outcome measure for NF1-OPG clinical trials. Teller acuity cards are recommended for use as the primary VA endpoint, and HOTV as a secondary endpoint once subjects are old enough to complete it. The optic disc should be assessed for pallor, as this appears to be a contributory variable that may affect the interpretation of VA change over time. Given the importance of capturing patient-reported outcomes in clinical trials, evaluating visual quality of life using the Children's Visual Function Questionnaire as a secondary endpoint is also proposed. Conclusions:The use of these key functional endpoints will be essential for evaluating the efficacy of future OPG clinical trials. Neurology ® 2013;81 (Suppl 1):S15-S24 GLOSSARY CVFQ 5 Children's Visual Function Questionnaire; logMAR 5 logarithm of the minimum angle of resolution; MS 5 multiple sclerosis; NF1 5 neurofibromatosis type 1; OCT 5 optical coherence tomography; OPG 5 optic pathway glioma; PFS 5 progression-free survival; QOL 5 quality of life; REiNS 5 Response Evaluation in Neurofibromatosis and Schwannomatosis; RNFL 5 retinal nerve fiber layer; TAC 5 Teller acuity cards; VA 5 visual acuity; VEP 5 visual evoked potential; VF 5 visual field.Optic pathway gliomas (OPG) arise in 15%-20% of children with neurofibromatosis type 1 (NF1), occur preferentially in young children compared with adolescents or adults, and cause vision loss in as many as half of those affected.1 In this regard, the main objective in clinical management of these tumors is preservation of visual function. Although prognostic factors have been identified, there are currently no reliable indicators of future visual loss. This absence of prognostic signs has led clinicians to avoid initiating treatment until visual function has declined. When treatment is indicated, NF1-OPG are typically managed with a combination of carboplatin and vincristine-an approach that has not changed in 15 years. 2To date, OPG clinical trials have focused on imaging outcomes, with tumor response and/or progression-free survival used as measures of treatment success.

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“…The Children's Visual Function Questionnaire (CVFQ) developed by Felius et al is an instrument designed for parents of children aged p7 years to assess the influence of children's visual disorders on themselves and on their families. 1 The CVFQ was filled by the girl's parents before and 6 months after surgery, and the CVFQ total score and subscale scores represented better results (higher scores) after surgery, except for the general health subscale (Table 1). We thought that in the assessment of cataract in children, not only the visual acuity but also the quality of children's life is the concern at the time of surgical intervention.…”

mentioning

confidence: 99%

“…2,3 In this case, the cataract extraction and multifocal IOL implantation were successful in treating the amblyopia and in reshaping the patient's personality. Myopic foveoschisis (MF) occurs in 9-34% of highly myopic staphylomatous eyes, [1][2][3] which may be associated with or may progress to foveal detachment or macular hole, which in turn are associated with decreased visual …”

mentioning

confidence: 99%

The surgical outcome and personality change in a child with congenital cataract after multifocal intraocular lens implantation

Lin

Hsu³

2009

Eye

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Sir,The surgical outcome and personality change in a child with congenital cataract after multifocal intraocular lens implantation A 7-year-old girl first presented in January 2007 with bilateral cortical cataract combined with high hyperopia and astigmatism. The refractions were þ 3.75 spherical diopter (DS)/À1.75 diopter of cylinder (DC) Â 175 in the right eye (OD), and þ 4.25 DS/À2.25 DC Â 170 in the left eye (OS). The best-corrected visual acuity (BCVA) was 20/32 in either eye (OU). Spectacles correction and CAM vision-stimulator treatment once a week were prescribed, and BCVA in OU reached 20/25 after 5 months. However, the cortical opacity (OU) aggravated gradually. As the BCVA decreased to 20/40 OD and 20/70 OS in January 2009, bilateral simultaneous phacoemulsification with multifocal IOLs-Tecnis MF (ZM900, AMO) implantation OU was performed in February. The refractions were þ 1.25 DS/À2.25 DC Â 170 OD and þ 1.0 DS/À2.75 DC Â 175 OS 4 weeks after surgery, and the BCVA was 20/30 OU. New spectacles were prescribed and 6 months later the BCVA reached 20/20 OU without performing the CAM treatment after surgery.According to the statement of the parents, the girl had become introverted and shrinking while vision decreased. However, the girl is vigorous now and is willing to participate in outdoor activities. The Children's Visual Function Questionnaire (CVFQ) developed by Felius et al is an instrument designed for parents of children aged p7 years to assess the influence of children's visual disorders on themselves and on their families.1 The CVFQ was filled by the girl's parents before and 6 months after surgery, and the CVFQ total score and subscale scores represented better results (higher scores) after surgery, except for the general health subscale (Table 1). We thought that in the assessment of cataract in children, not only the visual acuity but also the quality of children's life is the concern at the time of surgical intervention. In recent years, new surgery techniques, designed IOLs, and IOL materials have proved to yield good results in senile cataract surgery.These advances have also increased the success rate of cataract surgery in children. 2,3 In this case, the cataract extraction and multifocal IOL implantation were successful in treating the amblyopia and in reshaping the patient's personality. Conflict of interestThe authors declare no conflict of interest.

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Development of an instrument to assess vision-related quality of life in young children

Cited by 91 publications

References 15 publications

Proposed outcome measures for prospective clinical trials in juvenile idiopathic arthritis–associated uveitis: A consensus effort from the multinational interdisciplinary working group for uveitis in childhood

Proposed outcome measures for prospective clinical trials in juvenile idiopathic arthritis–associated uveitis: A consensus effort from the multinational interdisciplinary working group for uveitis in childhood

Functional outcome measures for NF1-associated optic pathway glioma clinical trials

The surgical outcome and personality change in a child with congenital cataract after multifocal intraocular lens implantation

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