Defining the Content for a New Quality of Life Questionnaire for Students with Low Vision (The Impact of Vision Impairment on Children: IVI_C)

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

doi:10.1080/09286580701772029

Cited by 65 publications

(58 citation statements)

References 25 publications

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“…9,27,62,84 For example, the 25-item Cardiff Visual Ability Questionnaire for Children (CVAQC) assesses self-reported visual ability in children and young people with a visual impairment. 84 One important function of outcomes research is to assess the cost effectiveness of health and social care interventions so that policy makers can make judgments about a particular treatment/intervention.…”

Section: Outcome Measures For Assessing the Effectiveness Of A Sermentioning

confidence: 99%

“…Most QoL questionnaires for children have been developed from, or include, opinions and experience of caregivers and/or experts rather than from the direct responses of children. 8,27,62 More recently, focus group work with children and Rasch analysis have been used to develop an outcome measure of direct relevance to the lives of children but it has not yet been used to evaluate service provision. 84 There are other practical barriers which hinder the assessment of vision rehabilitation in children, including the relatively low prevalence of visual impairment in this age group 113 and the numerous causes of visual impairment in children, which often form part of wider conditions or disabilities, making this a difficult group to research.…”

Section: J the Effect Of Rehabilitation On Outcomes In Childrenmentioning

confidence: 99%

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How Effective is Low Vision Service Provision? A Systematic Review

Binns

Bunce

Dickinson

et al. 2012

Survey of Ophthalmology

202

209

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This is the unspecified version of the paper.This version of the publication may differ from the final published version. Permanent repository link Abstract.Visual impairment is a large and growing socioeconomic problem. Good evidence on rehabilitation outcomes is required to guide service development and improve the lives of people with sight loss.Of the 478 potentially relevant articles identified, only 58 studies met our liberal inclusion criteria, and of these only 7 were randomized controlled trials. Although the literature is sufficient to confirm that rehabilitation services result in improved clinical and functional ability outcomes, the effects on mood, vision-related quality of life (QoL) and health-related QoL are less clear. There are some good data on the performance of particular types of intervention, but almost no useful data about outcomes in children, those of working age and other minority groups. There were no reports on cost effectiveness. Overall, the number of well designed and adequately reported studies is pitifully small; visual rehabilitation research needs higher quality research. We highlight study design and reporting considerations and suggest a future research agenda.

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Section: Outcome Measures For Assessing the Effectiveness Of A Sermentioning

confidence: 99%

Section: J the Effect Of Rehabilitation On Outcomes In Childrenmentioning

confidence: 99%

How Effective is Low Vision Service Provision? A Systematic Review

Binns

Bunce

Dickinson

et al. 2012

Survey of Ophthalmology

202

209

View full text Add to dashboard Cite

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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: 70%

“…27 While early assessment and appropriate correction of vision impairment are essential, it is also important to understand how impaired vision affects a patient's dayto-day activities such as dressing, eating, writing, communications or interactions with others, travel, mood, and social relationships. In 2008 Cochrane et al 7 first identified the different aspects that needed to be addressed to develop a complete questionnaire to evaluate the impact of vision impairment in children (ages 8-18 years), based on information from vision-impaired children and their support providers. These authors interviewed visually impaired children and their families, teachers, and special instructors to include all perspectives.…”

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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“…Moreover, none of the tools reflect the opinions and experiences of the population of concern -the focus groups -and instead rely upon the opinion of experts or caregivers (Balch & Mertens, 1999;Ronen et al, 2001). Proxy opinion is recognised as a serious limitation to accurate interpretation of quality of life (Fayers & Machin, 2000;Cochrane et al, 2008). Therefore, there is a need for a user-defined tool (Ronen et al, 2001) to describe and quantify the impact of hearing loss on children.…”

Section: Introductionmentioning

confidence: 99%