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Jarinne Woudstra-de Jong

Measurement of Quality of Life with Patient-Reported Outcome Measures for Patients with Vitreoretinal Conditions

Vitreoretinal eye conditions have a major impact on people’s quality of life (QOL). To quantify QOL, patient reported outcome measures (PROMs) should be used. These are standardized, validated questionnaires that elicit information from the patient about a given outcome. PROMs can be used for screening, symptom monitoring, needs assessment, patient-centered care, shared decision-making, and to evaulate treatment effectiveness. Current PROMs for retinal detachment, macular hole, epiretinal membrane, vitreomacular traction, and vitreous floaters have irrelevant or limited content, beacuse patients were not involved when creating the questions in the PROM. They are also rarely validated.

In the Rotterdam Eye Hospital (The Netherlands), we will develop and validate different disease-specific PROMs for these eye conditions.

To develop the content of the PROMs, we did a systematic literature review and performed in-depth interviews with patients about their experienced QOL. The pilot PROMs have been subjected to
cognitive interviews. Over the next two years, we will evaluate the psychometric properties of the PROMs.

Eventually, the PROMs will be administerd via computerized adaptive testing (CAT). This method allows
for precise measurement with less questions asked, decreasing respondent burden.

Key sentences

  • Vitreoretinal (VR) conditions have a large impact on quality of life
  • Quality of life is measured with patient-reported outcome measures
  • There are no validated patient-reported outcome measures with relevant content for VR conditions
  • To develop a patient-reported outcome measures, you need to involve patients
  • Different patient-reported outcome measures for VR are developed in the Rotterdam Eye Hospital (the Netherlands)