Research project
Title: Functional Vision (FV) and Vision-related quality of life (VQoL) of children and young people with visual impairment: development of age-appropriate patient reported outcome measures (PROMs) for routine use in paediatric ophthalmology
Project timescale: From 05 September, 2007 to 05 December, 2015
(Added to website on: 17 September, 2012 - Date last updated: 06 February, 2013)
Source of funding:
Fight for Sight, Guide Dogs for the Blind Association, NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology and NIHR Central and East London Comprehensive Local Research Network
Aims: The overarching aim of this research programme is to develop a suite of robust and reliable age-appropriate patient-reported outcome measures (PROMs) of functional vision (FV) and vision-related quality of life (VQoL) of children and young people with ophthalmic disorders that lead to visual impairment.
Research designs used:
Other: Mixed methods
Methods used to collect data:
Focus groups
Interviews
Questionnaire survey
Other (please specify):
Research project description: The recent surge in development and NHS application of vision-specific patient-reported outcome measures for adults has not been matched in paediatric ophthalmology. In 2007 we started a programme of research investigating the impact of childhood visual impairment, in which we have developed two child-appropriate self-report patient reported outcome measures (PROMs) for children: a vision-related quality of life (VQoL) instrument and a complementary functional vision (FV) and instrument. These allow children and young people to describe and quantify the impact on their everyday lives of both their visual disability and the health care they receive. These instruments are for 10-15 year olds, chosen for our ‘foundation’ research to develop conceptual frameworks and child-centred methodology. We are currently continuing this research to adapt these instruments to children aged 6-9 years and young people aged 16-18 years, providing a suite of age-appropriate instruments for the whole population. Our research will provide a means of supporting children and young people with visual disability by giving them a voice in decisions about clinical care and in evaluation of treatments. Rather than a new therapy, we are developing tools that will enhance the quality of life and well-being of children and young people by enabling them to be partners in both the planning and evaluation of their health care- both in NHS routine practice and in the context of trials of new treatments for blinding disorders.
Stages at which the public were involved:
Prioritising topic areas
Training other people to carry out the research
Planning the research
Managing the research
Designing the research instruments
(eg questionnaires, patient information sheets)
Analysing the research
Seeking funding / applying for funding
Other:
Description of public involvement in research stages: A service user (an ophthalmic service user and parent of an ophthalmic service user) has been a long standing member of the study advisory group and is a coapplicant on this project and the grant supporting it. She has contributed her unique perspective thus far, including identification of areas of priority, research design and planning, qualitative analysis of interview data and design of the study materials. An expert reference group of visually impaired young people at a specialist school for pupils with visual impairment were consulted on the areas of priority for this and future research in this area. They also contributed their expertise by training the researchers to interview children with visual impairment and, along with their parents and teachers, contributed to development of an information pack for young people with visual impairment and their families. Pupils from this and two other specialist schools for young people with visual impairment were consulted on designing the study materials. We will adopt the same approaches in our continuing related research ensuring that our research is robust, credible and relevant to our service users.
Training and support provided for either members of the public or researchers involved in the project:
Examples of ways the public have made a difference to the research project: The expert reference group of pupils with visual impairment has advised on methods of questionnaire administration, structure and content, ensuring that the novel questionnaires we were developing are age appropriate.
Evaluating the impact of public involvement in the research: In the first stage of developing our ‘quality of life’ questionnaire with 10-15 year old children and young people, we worked with the expert reference group of pupils with visual impairment in a school that caters for such pupils. We conducted focus groups and interviews with these pupils to help us identify the content for our instrument. In the focus groups we elicited the children’s thoughts and views about the impact of living with visual disability. As a result of this experience, the visual impairment unit initiated a ‘forum for the visually impaired pupils’ where the pupils meet weekly or monthly for an ‘around the table’ discussion of any issues that they might have (modelled on their participation in our research). Finally, the school was commended by Ofsted for this initiative.
Details of publications or reports resulting from the research: (1) Rahi, J.S., Tadić, V., Keeley, S., & Lewando Hundt, G. (2011). Capturing children and young people’s perspectives to identify the content for a novel vision related quality of life instrument. Ophthalmology; 118 (5):819-24) (2) Tadić, V., Hamblion, E.L., Keeley, S., Cumberland, P., Lewando Hundt, G. & Rahi, J.S. (2010). ‘Silent voices’ in research with visually impaired children: ethnicity and socio-economic variation in participation in studies of quality of life. Investigative Ophthalmology and Vision Science; 51(4):1886-90.
Links to Reports:
Was/is your project user controlled: No
For further information on the project, please contact:
Dr Val Tadic
Research Associate
UCL Institute of Child Health
Centre of Paediatric Epidemiology and Biostatistics
30 Guilford Street
London
WC1N 1EH
United Kingdom
v.tadic@ucl.ac.uk
0207 905 2807
Prof Jugnoo Rahi
UCL Institute of Child Health
j.rahi@ucl.ac.uk
0207 905 2250
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