A Social Media Listening Study to Understand the Unmet Needs and Quality of Life in Adult and Pediatric Amblyopia Patients.

Introduction: Amblyopia is an important cause of monocular vision impairment worldwide, and it negatively impacts patients' quality of life (QoL). Understanding patients' perspectives may help to optimize treatment outcomes and improve treatment adherence.

Methods: This was a non-interventional, retrospective analysis of social media data available in the public domain posted by patients and caregivers on selected social media channels (Twitter®, forums, blogs, and news) from 12 countries between July 2018 and June 2020.

Results: Approximately 2662 conversations relevant to the research objective were analyzed. The patient journey for adults and children was constructed based on the conversations. Eyeglasses, eye patches, contact lenses, and vision exercises were the common treatment options for amblyopia. Patients also reported vision improvement with emerging technologies such as digital therapeutics. Amblyopia and its treatment had a negative impact on QoL, and increased caregiver burden. Insurance coverage, long appointment waiting times, and recurring expenses of treatment options were reported as barriers to treatment. Non-compliance, switching between treatment options or technology, or discontinuation of treatment options was found to emanate from various issues including no improvement of the condition, discomfort with the treatment option, bullying, dissatisfaction with healthcare professional (HCP) recommendation, cost of treatment/issues with insurance coverage, side effects, and/or other unspecified reasons. The need for regular eye examinations, better diagnostic tests, awareness of the disease, awareness amongst HCPs about treatment options, and the need for better health insurance coverage policies emerged as unmet needs.

Conclusion: This social media listening study generated insights on patients with amblyopia and their caregivers regarding the patient journey, treatment options, reasons for non-compliance, reasons for switching HCPs, barriers to treatment, and unmet needs. Further qualitative research is required to validate the findings.