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

Sonia Manning-Charalampidou1,2, Jarinne Woudstra-de Jong2,3, Koorosh Faridpooya1,2

  • 1Department of Vitreoretinal Surgery, Rotterdam Eye Hospital, Rotterdam, the Netherlands.

Ophthalmology Science
|November 28, 2025
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This summary is machine-generated.

This study developed a new patient-reported outcome measure (PROM) for retinal detachment, involving patients in question creation. The resulting PROM captures unique quality-of-life impacts specific to 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.
Keywords:
Disease-specificPatient involvementPatient-reported outcome measureQuality of lifeRetinal detachment

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  • 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.