Developing a Patient Reported Outcome Measure (PROM) for inflammatory eye disease and validation of a novel approach for PROM content identification

Brief plain language background

Eye inflammation is a common condition and can happen at any age. It occurs in response to infection, allergies, irritation, injury or trauma to the eyes. But it can also happen in people who have an autoimmune condition where their immune system mistakenly starts to attack healthy tissues.

Eye inflammation can affect different parts of the eye – such as the white part of the eye (scleritis), the lining of the eye (uveitis) – and the optic nerve (optic neuritis). Long-term treatment is often required and affect patients throughout their life.

What problem/knowledge gap does it help address

Patient-reported outcome measures (PROMS) capture outcomes that matter to patients. There are several benefits, including supporting clinical trials of effective treatments as well as clinical assessment and monitoring. For example, directing clinical time towards a particular symptom.

Currently, there are no high-quality or comprehensive PROMS for people with inflammatory eye diseases.

Aim of the project

To develop a prototype PROM for inflammatory eye disease.

Alongside this, the researchers also aim to:

• Validate an approach to PROM content identification, utilising more stakeholders to improve the generalisability of the findings
• Finalise and validate a novel computational tool to quickly and cost effectively analyse text data

Key procedures/objectives

1. Recruit participants for an online questionnaire or focus group to generate data about their inflammatory eye disease, treatment and quality of life.
2. Expand on the existing tool to explore associations between symptoms and quality of life measures.
3. Validate the computational tool by comparing the outputs to another source.
4. Use the previous outputs to develop a prototype PROM, grouping items within the quality of life categories.
5. Test the PROM with three groups of people with an inflammatory eye disease – scleritis, uveitis and optic neuritis – removing items from the PROM tool that are not in line with the guidelines.

Potential impact on people with sight loss

Developing a PROM for inflammatory eye disease could improve understanding of the ways the condition can impact quality of life. Healthcare professionals could utilise the PROM to improve the quality of clinical assessment and monitoring of the condition. Changes in condition activity could be monitored by the patient using the PROM, encouraging them to seek treatment and prevent further damage to their sight.