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Simulating Macular Degeneration to Investigate Activities of Daily Living: Systematic Review Anne Macnamara1 , Celia Chen 2, V

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Simulating Macular Degeneration to Investigate Activities of Daily Living: Systematic Review Anne Macnamara1 , Celia Chen 2, V Simulating Macular Degeneration 1 Simulating Macular Degeneration to Investigate Activities of Daily Living: Systematic Review Anne Macnamara1 , Celia Chen 2, Victor R. Schinazi 3, Dimitrios Saredakis 1, & Tobias Loetscher 1 1 Cognitive Ageing & Impairment Neurosciences Laboratory, UniSA Justice & Society, University of South Australia, Adelaide, SA, Australia 2 College of Medicine and Public Health, Flinders Medical Centre, Flinders University, Adelaide, SA, Australia 3 Social Sciences, Faculty of Society & Design, Bond University, Gold Coast, QLD, Australia Corresponding author: Anne Macnamara [email protected] Simulating Macular Degeneration 2 Abstract Purpose: The aim of this review is to synthesise the types of simulation methods that have been used to simulate age-related macular degeneration (AMD) during activities of daily living. Since investigating activities of daily living is a fundamental first step in developing intervention and rehabilitation strategies, it is imperative that simulation methods are as realistic as possible. Methods: A systematic search was conducted in five databases. A critical analysis of the advantages and disadvantages of each AMD simulation method followed. Of particular interest was the suitability of each method for the investigated activity, an assessment of clinical validation procedures, and evaluating adaptation periods for participants. Results: Eighteen studies met the criteria for inclusion. Synthesis of the methodology demonstrated that the choice of AMD simulation has been, and should continue to be, guided by the nature of the study. The review also revealed a clear gap in the literature regarding the lack of standardised time periods for adaptation. Conclusions: When used appropriately, simulation studies can effectively examine how AMD impacts activities of daily living. Consistency in simulation methodology is crucial to generating realistic behavioural responses under vision impairment simulation and limiting the influence of confounding stressors. Researchers should address the gap in knowledge regarding adaptation by exploring what is an adequate time required to acclimate to vision impairment simulations. Keywords: Age-related macular degeneration; vision impairment; simulation; activities of daily living; rehabilitation Simulating Macular Degeneration 3 Age-related macular degeneration (AMD) is a leading cause of visual impairments, that affects approximately two hundred million people globally (Jonas et al., 2017; Wong et al., 2014). The incidence of AMD is rising due to the aging population (Velez-Montoya et al., 2014). Vision loss due to non-neovascular AMD can be managed with the support of rehabilitation (Hooper et al., 2008), visual aids (Morrice et al., 2017), or environmental adaptions (Brunnström et al., 2004), but in severe cases of exudative AMD there may be irreversible blindness (Jonas et al., 2017). As vision declines, those with AMD report increasing difficulties engaging in activities of daily living (ADL), such as reading, cleaning, and cooking (Taylor et al., 2016). Research into AMD has predominantly focused on epidemiology and clinical treatments (Ramin et al., 2015), and less on the extent to which AMD affects ADL. However, characterising these practical difficulties associated with ADL is an important step in adopting intervention strategies and facilitating positive change for visually impaired communities. Many studies have asserted difficulties in ADL based upon self-reports from visually impaired patients (Desrosiers et al., 2009; Scilley et al., 2002; Walker et al., 2006). However, directly measuring task performance (e.g. reading, writing, collecting groceries) may be more useful than self-reports because it offers clinicians and researchers objective assessments of visual disability (Culham et al., 2004; Varadaraj et al., 2018; Wittich et al., 2018). Unfortunately, testing visually impaired patients for research purposes can sometimes be challenging because of safety, practical, or availability reasons. Interactive experiments can be a burden on the participants themselves, especially since visually impaired populations are more likely to have multiple physical and mental comorbidities (Court et al., 2014). Furthermore, there may be difficulties isolating the effects of visual impairment from the impact of coexisting impairments (e.g., cognitive decline) (Wood et al., 2010). Previous research suggests some procedures to mitigate these issues (Trujillo Tanner et al., 2018). An alternative approach to avoid these challenges is to simulate vision loss in normally sighted populations. Effective simulations of visual conditions can help understand the effects of eye conditions and help develop rehabilitation strategies. Simulation experiments have provided insights into the behaviours and capabilities of people with visual impairments (Lehsing et al., 2019; Wood et al., 2010). They have also been used as models for diagnostic visual assessments (de Haan et al., 2020), pilot experiments prior to testing in actual patients (Hwang et al., 2018), and as an educational tool for the wider community (Juniat et al., 2019). Critically, effective simulations can contribute to understanding the effects of eye conditions without subjecting a person to potential risks. For example, Foster and colleagues simulated cataracts via goggles on younger adults to examine safety aspects of descending stairs on older adults with cataracts (Foster et al., 2014). They found that highlighting stair edges with tread increased heel clearance placement and improved safety. Simulating Macular Degeneration 4 Likewise, to assess street-crossing behaviours, participants were positioned on the curb of a street and asked to judge when it would be safe to cross, under normal and simulated central vision loss conditions (Almutleb and Hassan, 2020). The judgements were similar for both conditions, leading researchers to conclude that eccentric viewing can modulate safety judgements, even with central vision deficits. But what constitutes an ‘effective simulation’? While vision impairment simulations may not provide an identical replication of vision loss, there are various procedures which can be implemented to enhance the authenticity of a simulation. The first being ‘validation’ - the process of determining whether the simulation is an accurate representation of a visual impairment. Valid simulations can be clinically ascertained through mechanisms such as visual acuity or visual field testing. Ensuring that simulations are as realistic as possible is essential when educating others about visual impairments and especially when making practical recommendations. Another component of effective simulations is ‘adaptation’. As AMD is a progressive disease (Jonas et al., 2017: Taylor et al., 2016), patients will typically lose their sight over the course of years; which is a sharp contrast to the immediate loss of vision experienced during a simulation. Previous research has been critical of simulation of vision loss and blindness. Researchers have suggested that some simulations may be ineffective because they focus on temporary immediate loss of sight (i.e. putting on a blindfold) as opposed to the long-term realities of being blind (Schinazi et al., 2016; Silverman, 2015). Visual impairments usually develop over time, giving the affected person an opportunity to adapt to the gradual loss of sight, and develop appropriate behavioural and cognitive compensatory strategies (Rai et al., 2019; Riazi et al., 2013). In contrast, a normally sighted person’s responses under simulation may be exaggerated and not account for these adjustments. Consequently, an effectively designed simulation study would allow time for normally sighted participants to acclimate to a simulation (e.g., training sessions, practice trials) prior to measurement (Aguilar and Castet, 2017). Providing an adequate adaptation period may limit confounding stressors and behaviours exhibited as a result of a sudden deprivation of sight. To our knowledge, there are no clear guidelines for an adaptation period before testing. Synthesising this literature is intended to provide transparency on the different types of simulation procedures and their suitability for investigating ADL. Even though some researchers may prefer to measure AMD patients directly, simulation studies offer researchers the option of a reduced risk alternative. Being able to investigate the behavioural struggles of ADL (without exposing visually impaired people to possible psychological and physical harm) is an important step in adopting intervention strategies and facilitating positive change for visually impaired communities. Given the implications of ADL research, it is crucial that the methods used to investigate them (i.e., vision impairment simulations) are reliable and trustworthy. Simulating Macular Degeneration 5 Recommendations will be made if this review observes impediments to the authenticity of this field of research. Systematic Search Strategy A systematic search was conducted to identify studies simulating AMD. The review was registered on Open Science Framework (https://osf.io/xkymc). Five electronic databases (Embase Classic+Embase, Ovid Emcare, Ovid MEDLINE ® All, Ovid Nursing Database, and PsycINFO) were simultaneously searched via Ovid, on 25th September 2020. A combination of search terms was employed: (“Macular degeneration” OR “Central vision loss” OR “Central scotoma”) AND (“Simulat*” OR “Replicat*” OR “Imitat*”
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