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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

1
Department of Ophthalmology, Oslo University Hospital, Oslo, Norway.
2
Institute of Clinical Medicine, University of Oslo, Oslo, Norway.
3
Norwegian Institute of Public Health, Oslo, Norway.
4
Institute of Health and Society, University of Oslo, Oslo, Norway.
5
Regional Research Support, Oslo University Hospital, Oslo, Norway.
6
Østfold University College, Halden, Norway.

Abstract

PURPOSE:

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.

METHODS:

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.

RESULTS:

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.

CONCLUSION:

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.

KEYWORDS:

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

PMID:
30198182
DOI:
10.1111/aos.13847
[Indexed for MEDLINE]

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