The Patient Voice in Neovascular Age-Related Macular Degeneration: Findings from a Qualitative Study
Bibliographic record
Abstract
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. 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 interviewers. Transcripts were analysed thematically. Patients (53% female) had a mean age of 77 years. Bilateral anti-VEGF injections were received by 24% (n = 4); and most (76%, n = 13) were adherent to their treatment. Patient emotions at diagnosis ranged from happiness at learning about the treatment for nAMD to being terrified of receiving an injection in the eye. Most patients mentioned feeling anxious and fearful before their first injection despite receiving reassurance. After the first injection, these feelings and apprehension abated for many, but not all. With the goal of maintaining the best possible vision, few (24%, n = 4) patients reported more than one missed appointment, and most had never considered stopping treatment. No patient reported additional assistance beyond family support; however, many had difficulties with recreational and domestic activities and had developed coping strategies. This study provides insights on patients’ emotions related to their experience of nAMD and its management, highlighting the varying experiences between individuals. It shows the importance of the patient’s voice when considering patient care and management, and how the nature and timing of interventions can improve the experience of living with and managing nAMD. Neovascular age-related macular degeneration (nAMD), also known as wet age-related macular degeneration (wAMD), is an eye condition that is a common cause of vision loss and worsens over time without treatment. This condition mainly occurs in people aged 70 years or older. The standard of care is an injection of anti-vascular endothelial growth factor (anti-VEGF) into the eye to minimise vision loss that continues over time without treatment. To maximise the benefits of treatment, injections are required at regular intervals over time. The purpose of this study was to understand the emotions and experiences of patients with nAMD about their disease, its consequences, and its management. Seventeen patients from three countries (France, Germany, and the UK) were interviewed over the telephone. Patients reported diverse feelings and responses to their disease and treatment. Many felt nervous and anxious at diagnosis and before their first injection (despite reassurances from their doctors); however, after the first injection, these feelings and apprehension abated for many, but not all. Most patients (76%) missed fewer than two appointments in the past year, and almost all (82%) did not consider stopping treatment. Patients learned to deal with their nAMD, but many had difficulties with daily activities. Patients developed ways to manage tasks such as cooking, cleaning, knitting, and driving. The insights from this study help understand how care for patients with nAMD can be improved by addressing patients’ concerns and feelings about their disease and treatment.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.000 | 0.000 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.000 | 0.000 |
| Bibliometrics | 0.000 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".