The Patient Voice in Neovascular Age-Related Macular Degeneration: Findings from a Qualitative Study

Abstract

Introduction: Visual impairment resulting from diseases such as neovascular age-related macular degeneration (nAMD) may cause behavioural, environmental, psychological, and logistical challenges that could act as barriers to effective uptake and sustainability of treatment with anti-vascular endothelial growth factor agents (anti-VEGFs). Understanding emotions and experiences of patients with nAMD may help inform the determinants of adherence, and could contribute to improvements in ophthalmic outcomes and quality of life. Methods: Seventeen patients with nAMD receiving anti-VEGF injections were enrolled from three clinics: one each in France (n = 5), Germany (n = 6), and the UK (n = 6). Patients' health information and treatment characteristics were collected. Individual phone interviews were conducted by experienced health care

Patient perspectives and barriers in the treatment of neovascular age-related macular degeneration in Denmark: a qualitative study

“…Conversely, another hospital handled this issue effectively by providing advance notice of appointments, which was appreciated by patients. These findings align with the work of Talks et al , 4 who suggest that knowing and understanding the timing of intraocular injections allows patients to mentally prepare and have confidence in the treatment process. These insights of the present study may inspire changes in organisational workflows that provide patients with advance appointment information and involve them in the planning process.…”

“…11 Furthermore, a study reported scenarios where patients would consider stopping nAMD treatment, including a perceived lack of treatment effectiveness, side effects outweighing benefits, changes in reimbursement and difficulties related to transportation. 4 Although it is known that some patients with nAMD do not adhere to the recommended treatment regimen, there is limited understanding of the factors contributing to their discontinuation or omission of treatment. This is especially relevant in a country like Denmark, where treatment is tax funded, unlike in other countries where patients are more aware of the cost.…”

“… 11 Furthermore, a study reported scenarios where patients would consider stopping nAMD treatment, including a perceived lack of treatment effectiveness, side effects outweighing benefits, changes in reimbursement and difficulties related to transportation. 4 …”

“…This is especially relevant in a country like Denmark, where treatment is tax funded, unlike in other countries where patients are more aware of the cost. 4 Barriers such as insufficient knowledge about the disease and treatment, long travel distances to the hospital, or frequent hospital visits may contribute to this issue. It is crucial to gain a comprehensive understanding of the patient population and address this knowledge gap by exploring the specific barriers they face during treatment.…”

“…With the increase in life expectancy, it is expected that the number of nAMD cases will rise, and by the year 2050, around 6.4 million patients worldwide will be diagnosed with nAMD. [2][3][4][5] nAMD primary targets the macula resulting in central vision loss and distorted images for affected patients. As the condition's name implies, nAMD is closely linked to the ageing process, with its prevalence rising from 3.5% in individuals aged 55-59 to 17.6% in those aged 85 years and older.…”