A qualitative survey to understand disease awareness, diagnostic challenges and perspective of anti-VEGF therapy in patients with neovascular age related macular degeneration in India
Author: Maulik Bhavsar (India)
Co-authors: Nitin Maksane
Age-related macular degeneration (AMD) is a major socioeconomic challenge worldwide, affecting 10% to 13% of adults >65 years of age. Individuals with AMD mostly mistake the disease symptoms for a normal sign of ageing which leads to conditions such as neovascular AMD (nAMD). It is the leading cause of vision loss in people aged >60 years worldwide. Key symptoms of nAMD include sudden blurred/distorted vision, blind spots developing in the line of sight, difficulty distinguishing between the colors, and difficulty carrying out daily routine activities. Anti-vascular endothelial growth factor (anti-VEGF) therapy is the standard of care for nAMD. Evidently, better treatment outcomes can be achieved with an early diagnosis of nAMD. However, numerous global clinical and real-world studies on patients with nAMD highlight the fact that ocular lesions are usually detected when there is already a considerable visual loss. Therefore, awareness must be increased among individuals aged 50 years and older, to save them from the potentially sight-damaging delays occurring from the symptom onset to diagnosis. The present patient-based survey was conducted to determine the symptoms experienced, challenges encountered from symptom onset to diagnosis of nAMD, and fear/concerns associated with the intravitreal anti-VEGF therapy.
Patient-based survey conducted across 6 metro cities in India (Mumbai, Delhi, Kolkata, Chennai, Bangalore, Hyderabad) in real-world settings.
This was a cross-sectional, questionnaire-based qualitative survey conducted between December 2020 and March 2021. The inclusion criteria were adult patients (≥50 years old, either gender) diagnosed with nAMD in the previous 3 years, who either received anti-VEGF therapy in a year prior in the private clinical settings or were recommended but rejected the anti-VEGF therapy. The inclusion of patients was verified through their previous medical and prescription records. The survey interviews were conducted telephonically for the duration of 45 to 60 minutes using a validated questionnaire. The survey evaluated general patient related information, the symptoms of nAMD experienced, referral to eye specialists (ophthalmologist/retina specialist), time taken to seek the help, challenges faced during the diagnosis process of nAMD, as well as fears or doubts regarding the initiation of intravitreal anti-VEGF therapy. The interviews were audio-recorded, and the responses were transcribed, segregated, and analyzed to check for common themes and trends.
Total 30 patients with nAMD were included, 18 received anti-VEGF therapy and 12 rejected the therapy. Majority patients were >60 years old (n=22). Most patients experienced watery eyes as the first symptom of nAMD, which gradually progressed to vision disturbances (unclear/blurred vision with distorted images), followed by gradual loss of central vision (few black spots developing into central vision loss). There was a delay of few days to few months from the patients before consulting either the optometrist/family physician. All patients visited an eye specialist (ophthalmologist/retina specialist), either on their own or post referral from family physician/optometrist. Diagnosis procedure at ophthalmologist included checking the history, current symptoms, routine eye check-up, eye scan using optical coherence tomography, and necessary blood tests. Few patients were further referred to the retina specialist for final diagnosis. Majority patients experienced discomfort during diagnostic work-up and found tests to be expensive, time-consuming, and difficult to manage. During the first consultation with specialist post nAMD diagnosis, patients were apprised that it is a common age-related eye disease, and the intravitreal anti-VEGF injection was the only effective treatment. All patients expressed a sense of fear about eye injections (fear of the process/administering procedure/recovery process/possible complications and side-effects).
The survey offered a unique insight into the patient awareness, diagnostic challenges, as well as treatment comprehensions from patient’s perspective, providing important implications for clinical practice. It concluded that there is a need to create awareness about certain distinguishing symptoms of nAMD versus general eye fatigue or other eye diseases. Awareness/alertness about the condition will ensure that the patients accept and discuss the symptoms earlier and more readily with their family, to seek timely medical help. A structured program at primary-care physician level for individuals ≥60 years of age can help identify early symptoms of nAMD. This will avoid the diagnostic delays by shortening the timeframe of symptom onset to diagnosis of nAMD (watery eyes + visual disturbance=suspect nAMD in the elderly). Lastly, the surveyed patients expressed fear of injection and concerns about the anti-VEGF therapy due to its ocular administration. Since the patients are already in an emotionally vulnerable position due to the symptoms and the condition, any patient support program and educational initiative can be of help to alleviate their fears and resolve their concerns about the therapy.
Maulik Bhavsar and Nitin Maksane are employees of Novartis India Limited
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