Daily Living With Early Retinal Diseases: The Patient Perspective

OBJECTIVES: To determine which daily activities are difficult to perform and important to patients who retain a good visual acuity in the early stages of neovascular age-related macular degeneration (nAMD) or diabetic macular oedema (DME). METHODS: Multinational, individual, structured interviews were conducted with consenting patients in Canada, France, UK and the USA to identify activities that patients find both important and difficult to engage in, despite good best-corrected visual acuity (BCVA) (defined as ≥64 letters on an Early Treatment Diabetic Retinopathy Study [ETDRS] chart). Patients were diagnosed with nAMD or DME for no longer than a year. The interview questionnaire was designed by the investigators, based on their own knowledge, data available in the literature, and advice from additional experts. Overall, 18 pre-defined activities pertaining to 4 categories (reading & writing, independent living, navigation & orientation, social interactions & occupation) were investigated. RESULTS: A total of 46 patients were interviewed; 26 with nAMD and 20 with DME. The average age was 72.1 ± 9.9 years. Patients had an average BCVA of 74 letters, and the majority were still driving. A majority of patients (74%) reported impairment in ≥1 activity due to their eye condition. Isolated cases reported impairment in up to 12 activities. Driving, adjusting to darkness, reading (print and on-screen), doing hobbies such as playing cards or creating artwork, and working with hands were difficult for the greatest number of patients. Of these, driving, reading, and doing hobbies were rated as being the most important. CONCLUSIONS: Patients who maintain good BCVA with nAMD and DME were found to still experience difficulties in performing important activities in their daily lives (ie, driving, reading, and doing hobbies) .This study suggests that endpoints other than BCVA may be needed to assess impairment from the patient perspective in the early stages of these diseases.