Background Presbyopia is a common progressive vision disorder characterised by an inability to focus on near objects. The emergence of newer treatment options in addition to spectacles or contact lenses highlights the importance of assessing patient/user preferences. Methods People with presbyopia and healthcare professionals (HCPs) took part in a moderated, structured discussion of specific questions on a virtual advisory-board platform. The objective was to better understand unmet needs and the experience of living with the condition. Closed and open questions were included. Results Nine individuals (age 40 to 70 years) with presbyopia participated, from Australia, China, France, Italy, Ireland, Japan and the US. One ophthalmologist and one optometrist represented the perspective of HCPs. Over two weeks, 621 posts were entered on the platform. There was widespread agreement that the often stated association between age and presbyopia was unfortunate. Some participants had developed presbyopia at 30–45 years of age. What is more, the association with age was seen as implying a natural process, reducing the incentive to treat. Instead there was a call for an action-oriented view of presbyopia as a condition which may be effectively treated in the future. All participants experienced dealing with presbyopia as burdensome, affecting quality of life to varying degrees. When considering new treatments, convenience was the most important factor. The option to administer drops when needed was considered favourable, but short-acting treatments may not reduce inconvenience compared with spectacles. Participants viewed a therapy that targets the underlying cause of the condition favourably compared with symptomatic treatment. Side effects would severely reduce the appeal of drops. For clinical trials in presbyopia, patient-reported outcomes should be mandatory and need adequately to capture quality of life. Studies in presbyopia must be designed to minimise the inconvenience to participants in order to counter the risk of high drop-out rates. Conclusions The interactive format provided insights into living with presbyopia, particularly the negative impact on quality of life, subjects’ openness to new therapies, and the need to move away from considering the condition an unavoidable and intractable consequence of ageing.
PurposeA 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.MethodsParents of amblyopic children, patient advocates and healthcare professionals took part in a moderated, structured discussion on a novel virtual advisory‐board platform.ResultsSeven 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.ConclusionPatient 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.
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