Visual impairment affects the lives of children in ways that aren’t always obvious to parents or healthcare professionals. Prof Jugnoo Rahi worked with young people to create questionnaires that assess the impact of visual impairment, and finally give children a voice.
In the UK, visual impairment in children is thankfully uncommon, especially compared to sight loss in adults. “But the shadow that it casts over the lives of these children means that we need to take it seriously,” says Prof Jugnoo Rahi from the Institute of Child Health in London.
Understanding young people’s lives
Clinical measurements and medical diagnoses can’t tell the full story of young people’s experiences. To fully understand the impact of visual impairment, researchers turn to ‘patient-reported outcome measures’, or PROMs.
PROMs aim to give patients a voice, helping ensure that the things that matter to them are recorded by doctors. PROMs questionnaires are increasingly being used in clinical trials to assess the ‘real’ impact of new treatments for people.
But to date, there has been a lack of effective PROMs questionnaires designed for young people with visual impairments. Previous attempts to develop questionnaires for children have sought the opinions of parents and healthcare professionals.
As a clinician herself, Jugnoo knows this isn’t the right approach: “With the best will in the world, I think I understand what it might mean to be visually impaired, but the reality is I actually don’t know.”
Created with young people
So, in a project funded by Fight For Sight, Jugnoo and her team set out to develop PROMs questionnaires for children and young people – crucially, with the input of young people themselves. This began with interviews with children from as young as seven up to 18 years of age.
The experiences Jugnoo’s team wanted to gather from the children fell into two categories. One was ‘functional vision’, how their visual impairment affected their day-to-day activities. The other was ‘vision-related quality of life’, defined as the difference between how you would like your life to be, and how you feel it actually is.
“The shadow that visual impairment casts over the lives of these children means that we need to take it seriously.”
From these interviews, Jugnoo and her team developed questionnaires, which were rigorously tested and refined with the help of around 200 children and young people.
The result was two PROMs questionnaires: one for Functional Vision and one for Vision-related Quality of Life. For the very first time, the questionnaires each had age-appropriate versions, for children aged 8 to 12 years old, and for young people aged 13 to 17.
Listening to children’s voices
Jugnoo and her team licence the questionnaires free-of-charge for academic researchers and professionals working with children. They’re now being used in clinical trials for treatments for visual impairment, as well as systemic conditions where sight is affected. Some local authorities are also using them to evaluate rehabilitation services and education services.
The questionnaires are also now being translated into several European languages. This will mean they can be used to compare experiences of young people in different countries, as well as in multinational clinical trials – essential when testing treatments for some of the rare eye conditions that affect children.
Jugnoo is delighted that the PROMs questionnaires are being widely used. But what she thinks makes them so special is the input they had from children and young people.
“We are very proud of the PROMs questionnaires, and we know it’s good science.
“But what it’s really about for us is that we know that means children’s voices are being captured in a way that they weren’t before.”
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