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. 2024 Dec;13(12):3035-3046.
doi: 10.1007/s40123-024-01028-4. Epub 2024 Sep 16.

The I-OPTA Questionnaire: A National Assessment of Patients with Neovascular Age-Related Macular Degeneration

Benjamin Sommer Thinggaard  1   2   3 , Kasper Hansen  4   5 , Freja Dinesen  4   5 , Maria Kjøller Pedersen  6 , Lars Morsø  5   7 , Yousif Subhi  5   8 , Jakob Grauslund  4   5 , Lonny Stokholm  5   7
Affiliations

The I-OPTA Questionnaire: A National Assessment of Patients with Neovascular Age-Related Macular Degeneration

Benjamin Sommer Thinggaard et al. Ophthalmol Ther. 2024 Dec.

Erratum in

Abstract

Introduction: Neovascular age-related macular degeneration (nAMD) is the leading cause of irreversible vision loss in developed countries. However, a significant gap persists in understanding this population, exacerbated by their advanced age and visual impairments, which can hinder research participation and access to healthcare. The purpose of this study was to describe the content of the questionnaire and the participating patients with nAMD.

Methods: The survey includes patients diagnosed with nAMD who had previously received treatment or were currently undergoing intravitreal anti-vascular endothelial growth factor (anti-VEGF) injections. Participants were recruited using various methods, as reaching out to patients who are no longer receiving treatment poses a particular challenge. A patient and public advisory board assisted throughout the study period.

Results: Of the 713 electronic invitations sent out, 494 (69.3%) patients responded to the questionnaire, with an additional 57 responses obtained through e-mail or telephone interviews. Due to the exclusion of 16 responses, there were a total of 535 valid responses, including 176 from patients previously treated and 359 from those currently undergoing treatment for nAMD. The median age of respondents was 79.9 years (interquartile range [IQR] 75.5-84.7), with 59.8% being women. Among them, 53.2% were married, while 43.1% lived alone.

Conclusions: Data from the I-OPTA (Identification of Patient-Reported Barriers in Treatment for nAMD) questionnaire allows future exploration of patients who are no longer receiving treatment, patients' knowledge about preventive measures, and the impact of nAMD on visual function and quality of life. Future research, including studies that integrate data from corresponding retinal images and Danish national registers, has the potential to generate invaluable knowledge, providing benefits to both patients and healthcare professionals.

Keywords: Neovascular age-related macular degeneration; Preventive measures; Quality of life; Questionnaire; Retinal disease; Visual function.

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Conflict of interest statement

Declarations Conflict of Interest Benjamin Sommer Thinggaard has received speaker’s fee from Roche. Yousif Subhi have received speaker’s fee from Bayer and Roche, and have served as an advisory board member for Apellis, not related to this work. Yousif Subhi is an Editorial Board member of Ophthalmology and Therapy, however, was not involved in the selection of peer reviewers for the manuscript nor any of the subsequent editorial decisions. Jakob Grauslund declares to have received speaker’s fee from Allergan, Bayer, Novartis, and Roche, and to have served as an advisory board member for Allergan, Apellis, Bayer, Novartis, and Roche, not related to this work. The authors confirm that only they have contributed to the study, and none of the companies were involved in the research, analysis, or writing of this manuscript. Kasper Hansen, Freja Dinesen, Maria Kjøller Pedersen, Lars Morsø, and Lonny Stokholm declare that no potential conflicts of interest exist in relation to this work. Ethical Approval The study adhered to the ethical principles outlined in the Declaration of Helsinki. Prior to participating in the study, all participants provided written informed consent. Confidentiality of the participants' data was strictly maintained, following established guidelines for data handling and protection. The study was assigned the record number 22/10138 in the register of the Region of Southern Denmark, indicating its official registration. Although the study was reviewed by The Regional Committees on Health Research Ethics for Southern Denmark, it did not require explicit permission to be conducted.

Figures

Fig. 1
Fig. 1
The recruitment process for patients with nAMD. *When contacted by phone, the patients had invalid phone numbers, did not answer calls, had poor hearing, declined participation, or had unfortunately passed away in the meantime. anti-VEGF anti-vascular endothelial growth factor, nAMD neovascular age-related macular degeneration
Fig. 2
Fig. 2
Number of responses for every part of the questionnaire. Only complete responses were included for parts 2 and 3, and only patients currently undergoing treatment were asked to answer part 4 about preventive measures. NEI-VFQ 25 National Eye Institute Visual Function Questionnaire-25, MacDQoL macular degeneration on quality of life
See this image and copyright information in PMC

References

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