Abstract
Purpose :
Ophthalmic questionnaires (e.g. NEI-VFQ-25) are validated to assess quality of life (QoL) in retinal diseases including neovascular age related macular degeneration (nAMD), diabetic macular edema (DME) or branch-/central retinal vein occlusion (B/CRVO). They do not thoroughly assess the patients' social and psychological status. We present the new BPZ-9, a novel, exploratory questionnaire which intends to capture a more comprehensive view on the patients' situation.
Methods :
The BPZ-9 instrument consists of 9 questions which assess patient dependency and wellbeing in terms of requirement for domestic care, walking difficulties, accompanying person necessary, anxiety about visual impairment or their disease or treatment, satisfaction with treatment, information provided and eye examinations, evaluated at baseline.
Results :
The BPZ-9 questionnaire was completed at 102 sites. No patient had previously received anti-VEGF injections. Data was collected from 1444 nAMD (mean 78 years), 445 DME (67 y), 233 BRVO (70 y) and 144 CRVO (71 y) patients. 27% of patients had walking difficulties, ranging from 18% (BRVO) to 29% in nAMD (DME 24%, CRVO 22%). 12-23% of patients needed an accompanying person (23% nAMD, 21% DME, 12% BRVO, 19% CRVO). Most patients reported anxiety concerning visual impairment: 77% of nAMD patients, 73% DME, 73% CRVO and 60% of BRVO patients. Concern about their disease or treatment was mixed: while 32% and 44% of nAMD patients were very/moderately distressed, distress about treatment and disease control was lower (11% very, 34% moderately distressed). Within the DME, BRVO and CRVO groups a lower proportion of patients was very distressed by the disease (26%,24%, 23%), the majority was “moderately distressed” (42%,47%, 42%). Concern about treatment and controls was at the same level compared to nAMD patients. Overall, most patients were very satisfied with their treatment (73%) and felt very well informed (81%).
Conclusions :
When patients with retinal disease initially require anti-VEGF therapy, they might face impaired mobility, dependency on others, distress and anxiety about their retinal condition and therapy. These factors may lead to social and psychological concerns influencing their behavior and attitude towards their disease. More research on patient psychology, attitude and impairments in treatment outcome is needed.
This abstract was presented at the 2022 ARVO Annual Meeting, held in Denver, CO, May 1-4, 2022, and virtually.