A qualitative exploration of eyecare professional perspectives on Age-Related Macular Degeneration (AMD) care

Despite the existence of evidence-based recommendations to decrease risk and progression of Age-Related Macular Degeneration (AMD) for some time, self-reported practices suggest that eyecare professionals’ advice and people with AMD’s adherence to these recommendations can be very poor. This study uses qualitative methods to explore Australian eyecare professionals’ perspective on barriers to effective AMD care. Seven focus groups involving 65 optometrists were conducted by an experienced facilitator. A nominal group technique was used to identify, prioritize and semi-quantify barriers and enablers to AMD care. Participants individually ranked their perceived top five barriers and enablers with the most important granted a score of 5 and the least important a score of 1. For each barrier or enabler, the number of votes it received and its total score were recorded. Barriers and enablers selected by at least one participant in their top 5 were then qualitatively analysed, grouped using thematic analysis and total score calculated for each consolidated barrier or enabler. In-depth individual interviews were conducted with 10 ophthalmologists and 2 optometrists. Contributions were audio-recorded, transcribed verbatim and analysed with NVivo software. One hundred and sixty-nine barriers and 51 enablers to AMD care were identified in the focus groups. Of these, 102 barriers and 42 enablers were selected as one of their top 5 by at least one participant and further consolidated into 16 barriers and 10 enablers after thematic analysis. Factors impacting AMD care identified through analysis of the transcripts were coded to three categories of influence: patient-centered, practitioner-centered, and structural factors. Eyecare professionals considered poor care pathways, people with AMD’s poor disease understanding / denial, and cost of care / lack of funding, as the most significant barriers to AMD care; they considered shared care model, access, and communication as the most significant enablers to good AMD care. These findings suggest that Australian eyecare professionals perceive that there is a need for improved patient support systems and appropriately funded, clearer care pathway to benefit people with AMD.

27 Barriers and enablers selected by at least one participant in their top 5 were then qualitatively 28 analysed, grouped using thematic analysis and total score calculated for each consolidated barrier or 29 enabler. In-depth individual interviews were conducted with 10 ophthalmologists and 2 30 optometrists. Contributions were audio-recorded, transcribed verbatim and analysed with NVivo 31 software. One hundred and sixty-nine barriers and 51 enablers to AMD care were identified in the 32 focus groups. Of these, 102 barriers and 42 enablers were selected as one of their top 5 by at least 33 one participant and further consolidated into 16 barriers and 10 enablers after thematic analysis.

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In 2015-2016, one in six Australians over the age of 50 had age-related macular degeneration (AMD) 44 [1]. The impact of this common disease of the aging on people with AMD is significant. Contributing 45 to approximately 70% of cases of bilateral blindness in non-indigenous Australians, AMD is the most 46 common cause of blindness [1]. Having AMD (any stage of disease severity) has been shown to significantly impair activities of daily living [2]. Several modifiable risk factors have been shown to 48 increase the risk of developing AMD and/or the speed at which the disease progresses [3,4]. These 49 include smoking and lifestyle risk factors such as dietary intake of antioxidants, low glycemic index 50 diets, dark leafy green vegetables, fish and dairy product consumption [5][6][7]. Optimal AMD care can 51 best be defined as appropriate and timely advice on uptake of dietary supplements and the 52 importance of following a healthy diet and lifestyle (including refraining from smoking    Table 2  14 290 291 These represent the greatest enablers of good AMD care as perceived by Australian optometrists.

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Education was the most frequently cited enabler, being cited by 24 of 31 participants and it 293 attracted the highest score of 94, more than 20 points above the next highest scoring enabler. Communication and trust 318 The themes of trust and communication sat at the intersection between the patient-centered and 319 the clinician-centered categories of influence. Communication was considered an important enabler 320 by eyecare professionals (Fig 2). Lack of trust was often associated with people with AMD's lack of 321 understanding and this was perceived to be related to the complexity of the information that is 322 given to them. Education 545 Education was ranked as the top strategy to improve AMD care delivery by optometrists in this study 546 (Fig 2). This theme included education of eyecare providers, people with AMD and the general public 25 547 (S3 Table) but the focus groups did not provide any insights on the potential design, feasibility and 548 effectiveness of these educational interventions.

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Strengths of this study include the mixed methods approach that allowed the participants to express 586 concerns in their own words, the involvement of primary and secondary eyecare professionals, and 587 the use of nominal group technique which allowed quantification of barriers and enablers. These 588 strategies are known to be helpful when trying to understand complex behaviours and characterise 589 knowledge, attitudes, and barriers of diverse stakeholder groups [23,48,49].

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There are some potential limitations to this study. The number of ophthalmologists interviewed for 592 this study was small and they were all from New South Wales and thus, the findings on the 593 ophthalmology perspective are based on fewer comments and may not be representative of the