Value of Findings
The results from this study generated important insights from both adult and pediatric patients with amblyopia and their caregivers across the globe on various aspects of the condition. Around 2662 conversations from social media were analyzed. Our analysis revealed that although conventional treatments, including eye patches, glasses, vision exercises, surgery, and contact lenses, continued to be the most popular treatment options, improvement in vision using emerging technologies was also mentioned. Symptoms and treatment options revealed by the posts were consistent with the current literature [
10,
19,
20]. The main reasons for switch and lack of compliance to treatment options included worsening of vision, discomfort, bullying, and huge financial burden/insurance issues. Patients mainly switched HCPs as a result of a referral by other HCPs and the need for a second opinion on diagnosis or prescribed treatment.
Unmet Needs in Patients with Amblyopia and Caregivers
Patients and caregivers utilized social media channels to gather information and share their perspectives during all stages of their disease journey, from initial presentation of symptoms to a HCP to management and follow-up. The need for greater awareness regarding the symptoms of amblyopia amongst patients and caregivers, and treatment options amongst HCPs was highlighted as an important unmet need.
Many studies have observed the lack of public knowledge about amblyopia, more so in rural areas [
21‐
25]. Early detection and timely treatment are key factors that would prevent vision loss due to amblyopia [
22,
26]. Regular eye examinations at schools could help in timely diagnosis and treatment initiation [
21,
23]. The American Academy of Pediatrics recommends amblyopia screening as a part of regular health checkups, with the use of instrument-based vision screening techniques for preverbal children [
27]. In the pediatric population, developing easier diagnostic procedures could improve the rate of diagnosis, as some existing eye tests (such as the Landolt ring chart) are considered complicated. Our study revealed long waiting times for doctor’s appointments, unavailability of eye specialists, and inadequate consultation services as limiting factors. The results suggested the need for greater awareness among HCPs regarding treatment options and encouraged a transparent dialogue with patients and caregivers about diagnostic procedures and results. Clear and effective communication between the HCPs and the patients was also suggested as an important factor affecting treatment adherence [
14].
Also, reliable treatment options for amblyopia, especially in adults, are lacking. Conventional treatment options, such as refractive correction and patching, are found to be more beneficial in children and, hence, were not undertaken as treatment by older children and adults [
28]. There is no single recommended treatment option for amblyopia, as the treatment approach varies among patients [
13]. Therefore, awareness of emerging treatment options, such as vision therapies and virtual reality technologies, and understanding their benefits, could aid in choosing the right treatment option for the patient, which in turn could reduce switching technology, prevent disease recurrence, and reduce the financial and societal burden. Lack of better coverage policies for vision therapies and eye surgeries often limits accessibility to treatment. Increasing the number of vision therapy providers could help patients and caregivers to undergo treatment at nearby locations rather than travelling long distances.
The recommended treatment option also needs to be comfortable for the patients to enhance treatment adherence and improve the QoL of the patients. Often, children who use patches are bullied at school, which has a negative impact on their mental well-being. Pre-school vision screening as early as possible could lessen the likelihood of bullying [
29]. Evidence supports that patching is associated with peer victimization and some children also reported feelings of stigmatization resulting in negative psychosocial outcomes [
30,
31]. Patients also experience emotional and physical impact with increased burden on caregivers; this is supported by the findings from a systematic review [
32]. The randomized control trials by the Pediatric Eye Disease Investigator Group demonstrated that following a period of treatment with eyeglasses, 2 h patching combined with 1 h near visual activities modestly improved moderate to severe amblyopia in children aged 3–7 years [
33]. The 2 h patching at home is encouraging in terms of emotional well-being as children do not have to an wear eye patch to school. Moreover, increasing the daily patching dose to 6 h, after initial 2 h patching treatment, led to more improvement in visual acuity after 10 weeks [
34]. However, a recent systematic and network meta-analysis found that the efficacy is comparable for most treatment options such as refractive correction (eyeglasses alone), patching of 2 h per day (patch 2 h), patch 6 h, patch 12 h, patch 2 h + near activities, patch 2 h + distant activities, atropine (Atr) daily, Atr weekly, Atr weekly + plano lens over the sound eye, optical penalization, and binocular therapy [
35]. In addition to more efficacious treatment modalities, holistic treatment approaches with support from society (family, friends, caregivers, schools, teachers, etc.), and HCPs may further help in improving treatment compliance, adherence, and optimize treatment outcomes in patients with amblyopia.
Study Limitations and Strengths
Only publicly available information on digital platforms has been accessed and used for this research; all personal identifiers were anonymized in the current study. Obtaining individual formal consent from patients and caregivers to use their data is not feasible, but as social media posts are in the public domain, it is implied that these can be used for research; however, there is some guidance available to protect the privacy of individuals [
36]. More clarity is required for conducting research using data available in the public domain [
37,
38]. Limited by the design of the study, it was assumed that the information provided by patients on the social media was authentic. The quality of insights gathered from the analysis of digital conversations was dependent on the richness of patient conversations, i.e., the details shared by patients about their health condition, treatment, medication, disease management challenges, QoL, etc. As social media data are unstructured in nature, a relevancy check was first performed to ensure suitability and alignment of available information with the objectives of our study before reporting findings. The unstructured nature of the data led to variations in sample size related to each research objective. During the sampling process, the nature of available digital content was found to vary across platforms primarily as a result of format (e.g., Twitter® vs. other internet forums). To overcome this, the most appropriate platform was first determined to derive in-depth consultative insights prior to presenting the results. Local language data were translated using Google translator, which could have accounted for some variations while drawing conclusions, since these were not validated by any language expert.
The literature related to SML studies is very sparse, especially in the field of ophthalmology [
17] probably because of the lack of the depth of data collected from public domain [
39,
40]. This is one of the first SML studies conducted to understand the unmet needs of pediatric and adult patients with amblyopia and their caregivers. This methodology gathered patients’ perspectives on various aspects of amblyopia, which provided ecological validity to other qualitative findings in the literature. However, the findings from this study should be supplemented with qualitative and quantitative research for any further validations.