Towards a Therapy for Geographic Atrophy: A Patient’s Experience

Figures & data

Figure 1 (A) Image of Right Eye using Heidelberg Spectralis. Near infrared shows geographic atrophy lesion with foveal island spared. Bscan shows loss of RPE and photoreceptor layer with hypertransmission consistent with geographic atrophy. (B) Image of Left Eye using Heidelberg Spectralis. Near infrared shows geographic atrophy lesion which has encroached on the fovea. Bscan similar findings to (A).

Table 1 Component Constructs of Sekhon et al’s Theoretical Framework of Acceptability (TFA); Construct Definitions; and Issues Discussed by Participant Relevant to Retrospective Acceptability of the Trial Intervention and Prospective Acceptability of Potential New Treatments

Component Construct in TFA	Definition within the TFA	Issues Raised in Participant’s Account
		Retrospectively (Regarding the Trial Treatment and Process)	Prospectively (Regarding Potential New GA Treatments)
Affective attitude	How an individual feels about the intervention	The logistics and uncertainties about what would happen on each trial visit caused significant anxiety. Nonetheless, these concerns “never, ever stopped me wanting to do the trial and have the injection”.	Because of the value the participant places on her sight, she has a positive affective attitude towards any treatment, with hope of “get[ting] some delay in the degeneration”.
Burden	The perceived amount of effort that is required to participate in the intervention	The participant highlighted waiting times, and disorganised and seemingly random processes as “frustrating” and “wearing”, contributing to the inconvenience of trial visits. She also discussed pain, discomfort and side-effects she experienced when certain clinicians administered the injections.	The participant anticipated that other people (or herself in future) might find it challenging to attend regular injections, for example due to comorbidities or transport options. To reduce burden, the participant stressed the need for a streamlined, “ergonomic” process for the delivery of routine injections.
Ethicality	The extent to which the intervention has a good fit with an individual’s value system	N/A – not discussed	Undergoing the new GA treatments would align with the participant’s value system, with a strong wish to maintain “independence, continuing independence for longer”.
Intervention coherence	The extent to which the participant understands the intervention and how it works (ie, the “face validity” of the intervention for the recipient)	The participant clearly understood how the trial worked, for example the fact that “there was a very definite wall up” between her care and the clinical trial research.	The participant raised certain queries about the delivery of the new GA injection treatments, although she understood that the processes within a clinical trial would likely be more rigorous and time-intensive than in routine care: “I would like to know what the typical process was? I mean, how many checks and tests are involved.”
Opportunity costs	The extent to which benefits, profits or values must be given up to engage in the intervention	N/A – not discussed	While positive about injections, the participant suggested monthly injections would be disruptive: “It’s a day out a month really.”
Perceived effectiveness	The extent to which the intervention is perceived as likely to achieve its purpose	N/A – as participant did not know if she received the treatment or not (“Of course, I didn’t know if I was a control”).	The participant stated that if having the injections, “I would make assumptions that it was going to go well.”
Self-efficacy	The participant’s confidence that they can perform the behavior required to participate in the intervention	The participant believed that a structured, consistent process on each clinic visit would have made her feel “much more confident and… less tired and less anxious”.	The participant anticipated the potential need for a relative or carer to accompany her to the clinic: “If it got much worse… then I might need somebody to accompany me”.