What shapes quality of life of visually impaired children/young people
Research type
Research Study
Full title
Promoting vision-related quality of life (QoL): first stage development of a model for intervention from the evidence of what matters most to visually impaired children and their families
IRAS ID
255525
Contact name
Jugnoo S Rahi
Contact email
Sponsor organisation
UCL Great Ormond Street Institute of Child Health
Duration of Study in the UK
4 years, 5 months, 29 days
Research summary
About 2 in 1000 children in the UK have a visual impairment (VI) that potentially significantly impacts a child’s development, education, and social and family life. We see children and young people with visual impairment with similar clinical/visual status, comparable family environments and socioeconomic characteristics, who have markedly different levels of quality of life (QoL). We aim to identify the factors that underlie these differences in QoL and, in the longer-term, to develop an intervention to improve the QoL of visually impaired children and young people.
Our first step to inform intervention development is to identify risk and protective factors that promote better QoL by investigating the views and experiences of children and young people with visual impairment and their families, as well as their personal and environmental characteristics.
We have already developed a suite of validated age-appropriate patient-reported outcome measures (PROMs) for QoL and functional vision that enables children to self-report their views of the impact of their VI on their everyday lives and of health care they receive. We will use these PROMs in a large scale survey of children and young people (aged 8 up to 18 years) with VI, and their parents, in combination with other questionnaires measuring the family environment, levels of support, social-emotional well-being, personal/psychological factors (e.g. stress, anxiety, coping, self-efficacy), health (e.g. health status, participation), as well as information on clinical and socioeconomic characteristics of the child. We will also undertake in-depth qualitative interviews with a subset of these participants.
The study will generate knowledge and information that can be used to develop a future intervention to improve the outcomes of children and young people with VI. The study will also contribute further evidence about the use of PROMs within paediatric ophthalmology as a means of ‘giving children a voice’.
REC name
London - Central Research Ethics Committee
REC reference
20/LO/1045
Date of REC Opinion
20 Nov 2020
REC opinion
Further Information Favourable Opinion