The Impact of Vision Impairment for Children (IVI_C): Validation of a Vision-Specific Pediatric Quality-of-Life Questionnaire Using Rasch Analysis

Cochrane, Gillian M; Marella, Manjula; Keeffe, Jill; Lamoureux, Ecosse L.

doi:10.1167/iovs.10-6079

Cited by 88 publications

(73 citation statements)

References 44 publications

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“…For example, the Impact of Vision Impairment for Children (IVI-C) instrument 13 can be used to assess the impact of visual impairment on VR-QoL, and the Cardiff Visual Ability Questionnaire for Children (CVAQC) 14 and the Functional vision questionnaire for children and young people with visual impairment 15 , to assess the impact on activities of daily living (functional visual ability).…”

mentioning

confidence: 99%

Quality of life and functional vision in children treated for cataract—a cross-sectional study

Tailor

Abou-Rayyah

Brookes

et al. 2017

Eye

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mentioning

confidence: 99%

Quality of life and functional vision in children treated for cataract—a cross-sectional study

Tailor

Abou-Rayyah

Brookes

et al. 2017

Eye

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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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“…Although it only concerns children from 8 to 18 years old with different causes of impaired vision (albinism, congenital conditions, or juvenile-onset degenerative conditions) and it does not address treatment options, it does underline the major differences between families and professionnals about a patient's needs and concerns. 7,8 Wen et al 34 also showed that preschool children with strabismus had a significantly worse QOL than unaffected children, confirming what was long suspected.…”

Section: Ophthalmological Assessmentmentioning

confidence: 69%

“…Further, specialist instructors demonstrated greater concern for academic participation and instruction than for social skills. Cochrane and colleagues 8 further validated their questionnaire in 2011. Although it only concerns children from 8 to 18 years old with different causes of impaired vision (albinism, congenital conditions, or juvenile-onset degenerative conditions) and it does not address treatment options, it does underline the major differences between families and professionnals about a patient's needs and concerns.…”

Section: Ophthalmological Assessmentmentioning

confidence: 99%

Need for standard outcome reporting systems in craniosynostosis

Szpalski

Weichman

Sagebin

2011

FOC

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Craniosynostosis is the premature fusion of one or more cranial sutures. When a cranial suture fuses prematurely, skull growth is altered and the head takes on a characteristic pathological shape determined by the suture(s) that fuses. Numerous treatment options have been proposed, but until recently there were no parameters or guidelines of care. Establishing such parameters was an important step forward in the treatment of patients with craniosynostosis, but results are still assessed using radiographic measurements, complication rates, and ad hoc reporting scales. Therefore, clinical outcome reporting in the treatment of craniosynostosis is inconsistent and lacks methodological rigor. Today, most reported evidence in the treatment of craniosynostosis is level 5 (expert opinion) or level 4 (case series) data. Challenges in obtaining higher quality level 1 or level 2 data include randomizing patients in a clinical trial as well as selecting the appropriate outcome measure for the trial. Therefore, determining core outcome sets that are important to both patients and health care professionals is an essential step in the evolution of caring for patients with craniosynostosis. Traditional clinical outcomes will remain important, but patient-reported outcomes, such as satisfaction, body image, functional results, and aesthetic outcomes, must also be incorporated if the selected outcomes are to be valuable to patients and families making decisions about treatment. In this article, the authors review the most commonly used tools to assess craniosynostosis outcomes and propose a list of longitudinal parameters of care that should be considered in the evaluation, diagnosis, and treatment evaluation of a patient with craniosynostosis.

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The Impact of Vision Impairment for Children (IVI_C): Validation of a Vision-Specific Pediatric Quality-of-Life Questionnaire Using Rasch Analysis

Abstract: The modified IVI_C is a unidimensional, reliable, and valid scale for assessing QoL of children with vision impairment. It provides a valid means of assessing the outcomes of interventions and needs in children with vision impairment.

Cited by 88 publications

References 44 publications

Quality of life and functional vision in children treated for cataract—a cross-sectional study

Quality of life and functional vision in children treated for cataract—a cross-sectional study

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

Need for standard outcome reporting systems in craniosynostosis

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