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Acta Ophthalmol. 2018 Dec;96(8):804-811. doi: 10.1111/aos.13847. Epub 2018 Sep 9.

Development and testing of a patient-derived questionnaire for treatment of neovascular age-related macular degeneration: dimensions of importance in treatment of neovascular age-related macular degeneration.

Author information

Department of Ophthalmology, Oslo University Hospital, Oslo, Norway.
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
Norwegian Institute of Public Health, Oslo, Norway.
Institute of Health and Society, University of Oslo, Oslo, Norway.
Regional Research Support, Oslo University Hospital, Oslo, Norway.
Østfold University College, Halden, Norway.



Studies reporting on patient perspectives during treatment of neovascular age-related macular degeneration (nAMD) are limited. Thus, the aim of this study was to develop and test psychometric performance of a patient-derived questionnaire to capture important experiences during intravitreal treatment.


Patients (n = 44) with at least 3-month experience of intravitreal injection treatment for nAMD identified the dimensions of priority and also performed a weighting procedure to develop a score for comparison. The questionnaire comprised two versions: one focusing on the relative importance' of the dimensions and one on the experience of the 'management' during treatment. The questionnaire was then tested for psychometric performance in a longitudinal design in newly diagnosed patients at baseline (n = 197), after three (n = 184) and six (n = 150) months of treatment.


Of the 15 included dimensions, the following were most frequently reported: 'receive treatment to preserve vision', 'information', 'waiting time', 'trust' and 'accommodating staff. The psychometric testing showed moderate reliability (intraclass correlation coefficient: 0.65-0.67) for the two versions and high level of face validity (8.3). The dimensions, 'preserving vision', 'early access to treatment', 'pain relief', 'information about the treatment/diagnosis' and 'visual aids' were consistently reported higher in 'importance' than in 'management', at both 3 and 6 months, indicating a potential for improvement in clinical practice for these dimensions.


This study provides a brief patient-derived questionnaire, expressed with a score with good psychometric performance that can be used for monitoring during intravitreal injection treatment of nAMD patients.


age-related macular degeneration; anti-VEGF; intravitreal injections; patient perspective; patient-derived questionnaire; patient-reported outcome measures

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