Family refusal of eye tissue donation from potential solid organ donors: a retrospective analysis of summary and free-text data from the UK National Health Service Blood and Transplant Services (NHS-BT) National Referral Centre (1 April 2014 to 31 March 2017)

Abstract

Objectives: Long-standing undersupply of eye tissue exists both in the UK and globally, and the UK National Health Service Blood and Transplant Service (NHSBT) has called for further research exploring barriers to eye donation. This study aims to: (1) describe reported reasons for non-donation of eye tissue from solid organ donors in the UK between 1 April 2014 and 31 March 2017 and (2) discuss these findings with respect to existing theories relating to non-donation of eyes by family members.

Design: Secondary analysis of a national primary data set of recorded reasons for non-donation of eyes from 2790 potential solid organ donors. Data analysis including descriptive statistics and qualitative content analysis of free-text data for 126 recorded cases of family decline of eye donation.

Setting: National data set covering solid organ donation (secondary care).

Participants: 2790 potential organ donors were assessed for eye donation eligibility between 1 April 2014 and 31 March 2017.

Results: Reasons for non-retrieval of eyes were recorded as: family wishes (n=1339, 48% of total cases); medical reasons (n=841, 30%); deceased wishes (n=180, 7%). In >50% of recorded cases, reasons for non-donation were based on family's knowledge of the deceased wishes, their perception of the deceased wishes and specific concerns regarding processes or effects of eye donation (for the deceased body). Findings are discussed with respect to the existing theoretical perspectives.

Conclusion: Eye donation involves distinct psychological and sociocultural factors for families and HCPs that have not been fully explored in research or integrated into service design. We propose areas for future research and service development including potential of only retrieving corneal discs as opposed to full eyes to reduce disfigurement concerns; public education regarding donation processes; exploration of how request processes potentially influence acceptance of eye donation; procedures for assessment of familial responses to information provided during consent conversations.

Keywords: corneal and external diseases; qualitative research; transplant pathology.