Content Validity and Cognitive Debriefing of a Patient-Reported Outcome Instrument Evaluating Symptoms and Disease Impact in Patients with Geographic Atrophy

Geographic atrophy – Signs, symptoms, and quality of life

“…The qualitative interviews highlight the need to ensure that information is provided so that patients gain knowledge about organizations, charities, and support networks that they can benefit from, which might reduce the psychosocial effects of GA (Boxell et al, 2017). Morga et al (2023) performed concept elicitation interviews with patients with GA to determine salient symptoms and impacts of GA (Figure 1). A symptom or impact was considered salient if it was mentioned by 50% of the 19 patients, and the average rating of how disturbing the symptom was more than 5 on a scale from 0 to 10.…”

“…Taylor et al ( 2020) identified various themes similar to Morga et al (2023) when interviewing patients from the UK with dry AMD in terms of functional and psychological impacts of diagnosis, visual loss, and coping strategies. Interestingly, only eight of the 27 participants had GA, and the majority of patients had intermediate AMD with a good visual acuity.…”

“…Morga et al. (2023) performed concept elicitation interviews with patients with GA to determine salient symptoms and impacts of GA (Figure 1). A symptom or impact was considered salient if it was mentioned by 50% of the 19 patients, and the average rating of how disturbing the symptom was more than 5 on a scale from 0 to 10.…”

“…At the later stages of GA, when the atrophic lesion involves the foveal region, the patient will experience further deterioration in visual function, with limits in key aspects of daily life and self‐maintenance (Holz et al., 2014). GA is associated with loss of functions and daily activities as well as a massive negative influence on quality of life (Morga et al., 2023). Understanding the experience of patients with GA is key in fulfilling the role of a health professional, both in counselling, but also in evaluating efficacy of new treatment options and rehabilitation initiatives.…”