Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study

Area of Science:

• Ophthalmology and Public Health
• Transplantation Medicine
• Palliative Care Research

Background:

• Sight loss affects over 2 million in the UK, with significant economic costs.
• Corneal transplantation and reconstructive surgery rely on eye tissue donation.
• Current eye tissue supply is insufficient to meet demand, necessitating new donation sources.

Purpose of the Study:

• To assess the potential eye donation population in palliative care settings.
• To map the donation climate and identify barriers/enablers for eye donation.
• To explore service user and provider views and develop an intervention to increase eye donation.

Main Methods:

• A 36-month mixed-methods, multicentre study.
• Involved scoping reviews, retrospective note reviews, qualitative interviews, and national surveys.
• Included service providers, service users, and expert consultees across England.

Main Results:

• 46% of deceased patients in palliative care met eye donation criteria, but less than 4% were approached.
• Service providers were motivated but lacked opportunity and capability; service users were willing but unaware.
• Service users desired to be offered eye donation; providers requested tailored training.

Conclusions:

• Palliative care settings present a significant, largely untapped resource for eye donation.
• Individual and organizational behavior changes, alongside information system improvements, are vital.
• The developed 'STEPS' toolkit aims to support eye donation in these settings.