The willingness of patients to participate in an eye donation registry for research
Reviewed by Sofia Rokerya

This paper explores the willingness of ophthalmic patients to donate their eyes post-mortem for research purposes. A total of 300 German patients with a median age of 70 years (range 19-95) completed the standardised questionnaire; 45.3% were female and the rest were male; 79.7% suffered from a chronic eye disease (e.g. cataract, glaucoma, age-related macular degeneration (AMD), diabetic retinopathy) and 41.0% of the patients had an acute ophthalmic disease (e.g. retinal detachment, corneal ulcer, vitreous haemorrhage) at the time. As regards education, 36.0% of the patients had professional education, 31.% had undergone a tertiary education (i.e., university degree), 15.6% had secondary education, 12.7% had primary education, and 4.0% had a doctorate. Eighty-three percent of the patients (n=249) stated that they would agree to donate their eyes after death. Of these, 92.8% (n=231), patients would agree to donate for research purposes. In terms of general organ donation, 62 (20.7%) of the surveyed patients stated that they had an already filled in an organ donor card. Of the remaining 238 patients who were asked about their personal reasons not to donate organs; 24.4% stated ‘addressable’ reasons (e.g., “lack of awareness of this topic”), while 27.3% reported reasons that were considered ‘potentially addressable’ (e.g., “fear of deformation of the body”); 48.3% reported reasons classified as ‘non-addressable’ (e.g., religious belief). Positive predictors for the willingness to donate eyes were the presence of an already filled in organ donor card, a masculine gender and presence of an acute ophthalmic disease. A negative predictor was being a patient of the intravitreal injection clinic, lower visual acuity and a higher age. For the subgroup of patients for which family members could be interviewed (n=33), the overall agreement on post-mortem eye donation was similar to the patient’s opinion regarding donation purposes. There were differences in the preferred way of education on post-mortem eye donation, with patients considering information through medical assistance personnel (54.5%) more appropriate than their relatives (30.3%). This study demonstrated that patient and family attitudes towards post-mortem eye donation and an eye donation registry are overall positive. It was found that reasons reported by patients against post-mortem eye donation are often related to misconceptions, most of which could be addressed, although not certainly resolved, during personal clinical consultation and education. The information gained from this survey can enable new programs to be developed or existing eye donation programs to be expanded to better understand eye diseases while also meeting the needs of potential donors. The study is certainly a long-term project. Limitations: A single centre study, generating a selection bias. The comparison of the attitudes of family members and the patient’s attitude was limited due to the small number of surveyed companions. Also, there is the possibility that the answers of the patient and the accompanying person could be mutually biased.

The willingness of patients to participate in an eye donation registry for research.
Huss MB, Schmitz-Valckenberg S, Finger RP, Löffler KU.
OPHTHALMOLOGICA
2021;244:179-86