Involving Patients in Developing a Patient-Reported Outcome Measure for Retinal Detachment

Area of Science:

• Ophthalmology
• Patient-Reported Outcomes
• Health Services Research

Background:

• Retinal detachment significantly impacts patients' quality of life (QoL).
• Existing patient-reported outcome measures (PROMs) may not fully capture the unique QoL aspects of retinal detachment.
• Patient involvement is crucial for developing relevant and comprehensive PROMs.

Purpose of the Study:

• To develop a novel PROM specifically for retinal detachment.
• To ensure patient perspectives are central to item (question) development.
• To create a comprehensive measure of QoL for retinal detachment patients.

Main Methods:

• A questionnaire development study was conducted across two centers.
• Maximum variance sampling recruited patients aged 18+ with primary rhegmatogenous retinal detachment.
• Semi-structured telephone interviews were used for item generation, followed by refinement and cognitive interviews.

Main Results:

• 1658 unique items were identified and classified into 11 QoL domains.
• The final PROM set includes 355 items across 11 domains, such as health concerns, emotional well-being, and activity limitation.
• A significant proportion (81%) of the identified items were novel and specific to retinal detachment.

Conclusions:

• The initial stage of developing a retinal detachment-specific PROM with patient involvement has been successfully completed.
• Retinal detachment has a substantial and largely unique impact on patient QoL.
• This new PROM provides a valuable tool for assessing the patient experience of retinal detachment.