Children and young people aged 8-15 years with severe allergic eye disease: Development and refinement of a developmentally appropriate Quality of Life measure
- Partners and collaborators: Central Manchester University Hospitals
- Primary investigator: 00995446
To convert an existing QOL measure for use by children
1. Stage 1a:- Create a paper copy of the questionnaire targeting age groups 8-15years
2. Stage 1b: - Graphic designers / multimedia specialists identified and engaged
3. Stage 2: - Pilot paper version with 10 VKC patients
4. Stage 3: - Revise paper version based on feedback
5. Stage 4: - Engage graphic designer and App developer to convert paper version to e-format
6. Stage 5: - Pilot administration of the e-version with 10 new patients and 5 clinicians to assess questionnaire acceptability, accessibility and feasibility of its administration
Vernal Kerato-conjunctivitis (VKC) is a relatively rare but severe allergic eye disorder mainly affecting 5-17 year old males. It generally resolves with puberty. Seasonal variability can be noted. Flares and quiescent phases are unpredictable and can affect both eyes. If VKC is not adequately managed during the active phase, the child or young person may become partially sighted or even blind for life. Timely intervention and frequent monitoring of VKC are crucial and the consequences of poor management and/or treatment can be devastating to the patients involved.
Within Manchester, Dr’s Vibha Sharma (Consultant Paediatric Allergist at CMFT) and Mr Susmito Biswas (Consultant in Paediatric Ophthalmology at CMFT) provide a joint specialist service for children with this condition. Monitoring currently involves specialist eye examination and the completion of Juniper’s quality of life questionnaire (JQoL). The JQoL assess allergic rhino-conjunctivitis, with only one out of six domains interrogating eye symptoms lacking focus on eye symptoms hence inadequately serves patients with VKC. Additionally, it is not age appropriate for children aged 8-15 years, this is the age group that represents most of our clinic attendees, although a very small fraction of children affected and attending our clinic are in the age group 5-8 years. The numbers will be too small for validation of a valid tool in nine months. Validation of a tool for 5-8 year olds will require a separate project spanning a longer duration.
Currently, there is no VKC quality of life questionnaire, written in English, which is appropriate for this age group. We wish to develop and validate such a questionnaire. We then wish to convert this into an interactive digitally accessible, child-friendly format that can be accessed via digital platforms such as mobile phones, iPads, tablets and conventional PC’s.
This proposed resource will enable children and young people to accurately report their symptoms themselves using age appropriate media, as opposed to the current practice of parents reporting their perceptions of their child’s symptoms or the child being asked to describe their symptoms in a clinic setting which may be inhibiting for them. It will also enable the symptoms to be easily recorded on a regular basis from a variety of locations, compared to the existing approach which is for parents to provide proxy reports of the child or young person’s symptoms during scheduled clinic appointments. The parents’ proxy accounts may not correspond with the patients’ symptom experiences, therefore the parent proxy approach is potentially inaccurate or misleading. An interactive, child and young person-friendly digital questionnaire should also improve compliance with the recording/monitoring process. The digital questionnaire will be combined with a web-accessible database and a simple reporting system which will enable clinicians to monitor the responses from all the patients under their care and enable basic trends in symptoms to be tracked. This tool will enable drug therapies to be titrated more accurately in a fashion which is more responsive to actual need.
Dr Vibha Sharma (PI), Mr Andrew Hall, Dr Sus Biswas, Professor Veronica Swallow (Co-PI),
Funding body: Central Manchester University Hospitals £15,000
Contact: Veronica Swallow