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

OBJECTIVE

To develop a retinal detachment-specific patient-reported outcome measure (PROM), by involving patients in item (question) development.

DESIGN

Questionnaire development study carried out in 2 single centers.

PARTICIPANTS

Patients were recruited from the Ophthalmic Emergency Department and the Vitreoretinal Outpatient Clinics of the Rotterdam Eye Hospital (Netherlands), using maximum variance sampling. Inclusion criteria were aged ≥18 years and a diagnosis of primary rhegmatogenous retinal detachment. Patients who had undergone retinal detachment repair by pneumatic retinopexy (a procedure not performed in the Rotterdam Eye Hospital) were recruited from the Vitreoretinal Outpatient Clinics of Newcastle Eye Centre (United Kingdom).

METHODS

Telephone interviews using an interview topic list, allowing minimum involvement of the interviewer and maximum involvement of the interviewee. Interview transcripts were coded into items (questions); items were grouped into quality-of-life (QoL) domains (themes) using an established ophthalmic QoL framework. Items similar to each other, too specific, or too unclear were removed. The minimal set of representative items was compared with the literature.

MAIN OUTCOME MEASURES: A minimally and fully representative set of unique retinal detachment-specific items.

RESULTS

Seventy-three patients were interviewed, before or after surgery. We identified 1658 unique items, which we classified into 11 QoL domains. After 3 rounds of item refinement and cognitive interviews, the final, minimally representative item set included 355 items classified in 11 QoL domains: health concerns (45 items), emotional well-being including effects of trauma (45), activity limitation (45), coping (39), visual symptoms (33), inconveniences (33), social well-being (28), ocular symptoms (23), general symptoms (23), economic impact (22), and mobility (19). Of note, 288 items (81%) were new. There was 35% overlap with items developed for patients with macular hole, epiretinal membrane, and retinal vascular occlusions.

CONCLUSIONS

We have completed the first stage of developing a retinal detachment-specific PROM with patient involvement. Retinal detachment impacts heavily on patients' QoL. Most of the QoL impact is unique to retinal detachment and described here for the first time.

FINANCIAL DISCLOSURES: The authors have no proprietary or commercial interest in any materials discussed in this article.