PI : Dr Jugnoo Rahi, Institute of Child Health, UCL
Gillian Lewando Hundt (University of Warwick), Phillipa Cumberland (Institute of Child Health), David Taylor (Institute of Child Health), Anthony Moore (Institute of Ophthalmology/Moorfield's Eye Hospital), Peng Tee Khaw (Institute of Ophthalmology/Moorfield's Eye Hospital), Alison Salt (Great Ormond Street Hospital) and Naomi Dale (Great Ormond Street Hospital)
Funding body: The Guide Dogs for the Blind Association
Serious visual loss during childhood is known to pose significant educational, employment, personal and social challenges throughout life. Nevertheless the perspective of children about the consequences of their visual loss and of their treatment to preserve or improve their sight has not been widely investigated. Vision-specific subjective outcome measures are needed which can differentiate between visually impaired children and capture their concerns. There are increasingly important and diverse applications of such vision-related quality of life (VRQOL) instruments. They can be used effectively in evaluating the broader benefits of new treatments to preserve and improve sight; applied in planning and provision of rehabilitation, education and social services; used in clinical settings to aid in managing individual patients; applied in population assessments of disease burden; and used for prioritising the agenda for service provision and for future research on visually impairing disorders of childhood. Prompted by the experiences of the visually impaired individuals with whom we work, and knowledge of current practice in other areas of child and adolescent health, we propose to develop the first VRQOL instrument for self-completion by children.