Consent For Future Corneal Transplantation And Eye Research From AMD Patients In An Ophthalmic Clinic

Abstract

Purpose: The demand for human tissue for corneal transplantation and for advancing research is increasing. In Australia, more than 95% of consent for eye donation is obtained from the next of kin (NOK) through Eye Bank by telephone interview at the time of donor death. The overall consent rate for eye donation was 57% in 2011. There is frequently a lack of clinical information on donor eyes provided for research. Patients with eye diseases often express that their eyes don’t see well therefore are not suitable for donation to help others. This study aims to evaluate the effectiveness of patient and NOK education by a direct approach at seeking consent for future eye donation for both corneal transplantation and research in eye clinic patients.

Methods: We established a novel approach in recruiting patients for future eye donation at a tertiary referral retinal clinic. Patients with age-related macular degeneration were approached and consent was sought for eye donation. A 15 minute face to face education of the benefits of donation was provided to all patients and their NOK. Qualitative and quantitative data were collected on the effectiveness of the intervention and consent rate.

Results: 228 patients were approached and registered between August and November 2012. At initial interview, 126 patients agreed to donation immediately after the education, 8 refused and 94 patients were undecided. 13/94 undecided patients (14%) then consented for donation at a later date. The final consent rate for donation was 61% (139/228). 81 patients (35%) remained undecided and may still consent in the future. The final refusal rate for donation was 3.5%. Donor files with all clinical information for all consented patients were established.

Conclusions: A direct approach with effective education in an ophthalmic diseased population resulted in high consent rate of eye donation. Initiating a pre-death eye donation allows donor eye tissue to be collected with minimal time delay thereby improving the tissue quality for both corneal transplantation and eye research. It also provides eye tissue for researchers with valuable documented longitudinal ophthalmic findings vital for clinicopathological correlation. A direct approach should be considered in all eye clinics by trained health professionals to educate the patients and their NOK for eye donation and to increase eye donor rates.

Keywords: 460 clinical (human) or epidemiologic studies: health care delivery/economics/manpower • 465 clinical (human) or epidemiologic studies: systems/equipment/techniques • 741 transplantation