Abstract
Purpose
Patients with neovascular age-related macular degeneration (nAMD) are treated with frequent intravitreal injections to maintain vision. The treatment frequency impacts the life of patients and caregivers and poses a major capacity challenge for Norwegian ophthalmic clinics. The purpose of this survey was to document patient-reported outcomes on how the disease and the treatment impact nAMD patients in Norway.
Methods
Norwegian nAMD patients voluntarily completed the survey. The patients reported the time spent on each treatment appointment, the need for caregiver support, treatment intervals, and the emotional impact of the treatment. There was no active selection of patients to the survey. Respondents had to confirm the nAMD diagnosis prior to submitting the response. All data was included in the analysis as submitted by the respondents. This survey was market research involving anonymous patient data, and no participants were identifiable.
Results
In total, 130 patients responded to the survey. The majority of patients reported to receive nine or more injections per year (48.8%), and many patients needed caregiver support for every treatment appointment (37.7%). Patients reported to be anxious one day (25.4%), two days (8.5%), one week (10.8%) or more than one week (3.1%) prior to treatment. The week before the treatment, 33.1% of patients reported to be stressed and 15.4% struggled to sleep. The majority of patients reported the treatment as uncomfortable (54.6%) or as somewhat painful (26.2%). The results on yearly number of injections, time used each treatment day and need for caregiver support suggested a variation between Norwegian hospital regions.
Conclusions
This survey uncovers how treatment with intravitreal injections represents a substantial burden for Norwegian patients with nAMD. Future research on how the treatment burden impacts nAMD patients may lead to more patient-centered care and help guide treatment decisions. New treatments with longer intervals between injections are likely to both reduce the treatment burden and improve capacity in ophthalmology clinics.
Acknowledgments
The authors acknowledge the Norwegian Association of the Blind and Partially Sighted for presenting information about the survey and its purpose in their digital channels, thereby allowing for increased awareness of how patients with nAMD perceive living with the disease.
Disclosure
Ragnheidur Bragadottir has been a member of a Roche advisory board in Norway in 2021 and 2022. Christian Bindesbøll and Kristoffer Andersen are employees of F Hoffmann-La Roche AG. The authors report no other conflicts of interest in this work.