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

Abstract

Purpose Geographic atrophy (GA) is the advanced form of the non-neovascular (dry) type of age-related macular degeneration. Presently, GA cannot be treated. However, new therapies administered by intravitreal injection are in late-stage development. These can slow down, but do not stop or reverse, GA progression. The acceptability of these emerging therapies to people with GA is currently unknown. The present case study explores the perspectives of a person living with GA who took part in the terminated Phase 3 clinical trial of Lampalizumab, a candidate intravitreal treatment for GA. We explored this patient’s perspective on the retrospective acceptability of regular Lampalizumab injections, and the prospective acceptability of future intravitreal therapies for GA. Patients and Methods A 78-year-old woman living in the UK was recruited as part of a mixed-methods pilot study and interviewed by telephone, regarding: her experience of the Lampalizumab trial injections; and her thoughts regarding emerging intravitreal therapies for GA. The Framework Method was used for initial inductive analysis of the interview transcript. Subsequently, deductive analysis was undertaken, informed by the Theoretical Framework of Acceptability (TFA). Results For this participant, intravitreal injections in the Lampalizumab trial were acceptable, although streamlining processes within the clinic would have improved the patient experience. Regarding prospective acceptability of new intravitreal therapies, the participant considered a delay in progression of GA a valuable goal. Potential discomfort, anxiety and inconvenience associated with regular intravitreal injections would be acceptable in the context of preserving her vision for as long as possible. Conclusion Analysis of one participant’s experience demonstrates the value of exploring GA patients’ unique views on the acceptability of new intravitreal treatments. Larger prospective studies will provide more insight that help to optimise treatment design and delivery, thereby maximising likelihood of adherence and persistence when these therapies eventually arrive in clinic.

Application of the theoretical framework of acceptability in a surgical setting: Theoretical and methodological insights

“…We propose that a new construct, ‘perceived safety and risk’, generates informative data related to patients' retrospective acceptability of surgical interventions. As reported above, the three papers identified that use or propose using the TFA in surgical interventions also considered the issue of risk as a potential influence on the acceptability of surgical interventions (Crombag et al, 2021; Enoch et al, 2021, 2023). These, together with the current study, suggest that perceived risk is a construct which may impact acceptability.…”

“…Enoch and colleagues reported they plan to explore an additional construct, patients' perception of risk of the treatment, in semi-structured interviews and via questions with Likert-type response scales. At the time of writing, results of the mixed methods study had not been reported, however, a single interview study with a trial participant, exploring retrospective and prospective acceptability of trial involvement was reported (Enoch et al, 2023). The interview guide developed for the mixed methods study was used (and not reported) and deductive data analysis was informed by the TFA.…”

“…Results related to risk were coded to the TFA construct of burden (e.g. “the additional risk of getting ….”; Enoch et al, 2023, p. 305). The inclusion of the additional construct associated with risk proposed by Enoch et al suggests the TFA was insufficient in a surgical context which reflects our experience.…”

Proliferative Sickle Cell Retinopathy: A Patient and a Physician’s Perspective on Quality of Life and Quality of Eye Care

“…This paper focuses on the perspectives and experiences of a single individual, an example of what might be termed an instrumental case study [ 13 ], whereby a single case is explored in its full complexity in order to provide illustrative insights into a broader issue. Such an approach has previously been used in ophthalmology to illustrate the complex, unique experiences of individuals living with geographic atrophy [ 14 , 15 ] and diabetic macular ischemia [ 16 ]. Analysis of Chanel’s experience of SCR is interwoven with insights derived from the relevant literature on SCD and its ocular manifestations.…”