Amblyopia-A novel virtual round table to explore the caregiver perspective.

PURPOSE

A survey aimed to capture the caregiver's perspective on the impact of amblyopia and its treatment on the child and family, as well as caregivers' views on the design and feasibility of clinical trials investigating dichoptic binocular therapies for amblyopia.

METHODS

Parents of amblyopic children, patient advocates and healthcare professionals took part in a moderated, structured discussion on a novel virtual advisory-board platform.

RESULTS

Seven parents of children with amblyopia, two patient organisation representatives, one ophthalmologist and one optometrist participated in the survey. A total of 645 posts were entered on the platform over a 14-day period in September 2021. There was widespread agreement that the management of amblyopia poses more of a burden on the child and family than the condition itself, with treatment burden accentuated when treatment is unsuccessful. Parents expressed uncertainty and frustration in relation to the duration of patching, success of patching and alternative treatment options, and felt there was inadequate readily available, easy-to-understand information on the condition. Parents reported that a new treatment for amblyopia, such as dichoptic binocular therapy using video games, should be safe, non-invasive and engaging compared with an eye patch. Treating at home, potentially for a shorter treatment duration, and with an entertaining game were the main reasons parents would join a clinical study with this type of novel therapy. However, due to a limited critical period treatment window, parents would feel more comfortable joining a clinical trial if traditional therapies were offered in conjunction with those under investigation.

CONCLUSION

Patient perspectives and the role of caregivers in the acceptance of any interventional treatments are increasingly recognised. Understanding how amblyopia and its treatment impacts a child and family should be an important premise to guide therapy and evaluate treatment value, both in clinical trials and in routine medical practice.