Title: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPPP)
Funder: Department of Health and Social Care

Abstract: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPP) aims to investigate the potential for eye donation (ED) in Specialist Palliative Care Services (SPCS) and Hospice Care Settings (HCS) as a means of increasing the supply of tissue for use in sight saving operations and corneal transplantation._x000D_ _x000D_ Background: According to the Royal National Institute of Blind people (RNIB) over two million people in the UK are living with sight loss and this number is predicted to double to nearly four million by 2050. Some of the conditions that lead to sight loss and impaired vision can be treated if eye tissue is available. The problem is that of all organs and tissues that can be donated, eyes are the least donated meaning that there is not enough tissue to undertake the 5000 corneal transplants that are reported to be needed on an annual basis. In the year 2015-2016 only 2,897 eyes were donated._x000D_ _x000D_ To bridge the gap in supply National Health Service Blood and Transplant (NHS-BT) - Tissue Services are seeking new routes of supply from SPCS and HCS however before allocating substantial resources to new referral routes TS needs evidence regarding the current potential and barriers to ED as this will inform service provision. The proposed 36 month study aims to answer the following research questions and achieve the study objectives by delivering three work packages:_x000D_ _x000D_ RQ1: What is the potential for ED in SPCS and HCS and what consequences will any increase in ED from these settings have for TS in relation to resources/infrastructure/logistics._x000D_ _x000D_ RQ2: What system based/attitudinal and educational barriers/facilitators to ED influence the identification and referral of potential eye donors in clinical settings and the embedding of ED in end of life care planning (EOLC)?_x000D_ _x000D_ RQ3: What behaviour change strategies will be effective in increasing ED across the community of service providers and service users within SPCS and HCS?_x000D_ _x000D_ Study objectives:_x000D_ Objective I) to scope the size and clinical characteristics of the potential ED population from research sites._x000D_ Objective II) to map the donation climate of each research site via a systematic assessment tool The Rapid Assessment of hospital Procurement barriers in Donation (RAPiD)_x000D_ Objective III) identify factors (attitudinal, behavioural) that enable or challenge service providers to consider and propose the option of ED as part of EOLC planning from a local and national perspective. Objective IV) Identify service users’ views regarding the option of ED and the propriety of discussing ED as part of admission procedures or as part of EOLC planning conversations._x000D_ _x000D_ Methods: three integrated work packages will triangulate data gained from six research sites across England via: qualitative (nonparticipant observation, interviews, focus groups, naturally occurring narratives) and quantitative methodologies (retrospective note review, questionnaires), informed by theoretical perspectives (Burden of treatment, Conflict Rationalisation, Gendered differences) and structured via intervention mapping methodologies (6SQuID) and consensus methods to develop, pilot, and evaluate an empirically based theoretically informed intervention designed to change behaviours in relation to the identification, approach/request and referral of patients from SPCS and HCS for ED.

Lay abstract: Eye Donation from Palliative and Hospice care contexts: investigating Potential, Practice, Preference and Perceptions (EDiPPP)_x000D_ _x000D_ Why is this research needed?_x000D_ According to the Royal National Institute of Blind people (RNIB) over two million people in the UK are living with sight loss and this number is predicted to double to nearly four million by 2050. Some of the conditions that lead to sight loss and impaired vision can be treated if eye tissue is available, for example, by corneal transplantation and reconstructive surgery, alongside research into of a wide variety of eye disease. The problem is that of all organs and tissues that can be donated, eyes are the least donated meaning that NHS Tissue Services (TS) who oversee eye donation (ED) in the UK are not able to supply enough tissue so that the reportedly needed 5000 corneal transplants can be undertaken. In the year 2015-2016 only 2,897 eyes were donated._x000D_ _x000D_ Why is there a shortage? We know that people hold very strong views about donating their eyes. They are concerned about disfigurement and view eyes as the windows to the soul. We also know people are squeamish about the idea of ED. In addition, health care professionals (HCPs) are reluctant to discuss the option of ED. This reluctance appears to be linked to views about what should/should not be discussed with people during end-of-life care planning (EoLCP). We know that the majority of people who die in the UK could donate their eyes as long as certain criteria are met and yet most people have very little knowledge about the option of ED._x000D_ _x000D_ What are we not so sure about? What we need to know is whether an increase in eye donation could be achieved by developing new routes of supply by approaching people in specialist palliative care settings SPCS) and Hospice Care settings (HCS) who have the potential to be eye donors after their death. We also need to know whether patients would be willing to donate their eyes and how they and their family members feel about discussing ED. This information is essential to NHS Tissue Services as they shape future service plans._x000D_ _x000D_ What we plan to do. We plan to find out how many patients from three SPCS and three HCS across England could have been eye donors, and how many patients were actually approached and referred to TS over a one-year period by reviewing the medical notes of 1200 patients against specific eligibility criteria. We will seek the views of HCPs, patients and their next of kin about the acceptability of discussing ED as part of EoLC via interviews, focus groups and gain a wider understanding of the challenges this option poses from a national survey of HCPs working in these contexts._x000D_ _x000D_ Key objectives of the proposed research include: I) to develop, pilot, and evaluate new ways of working developed in collaboration with research participants, PPI and key stakeholders which are aimed at changing behaviours in relationship to the identification, approach/request and referral of patients for ED from SPCS and HCS, and II) to make a significant contribution to the limited knowledge that we have regarding barriers to ED, and the lack of effective behaviour change strategies across the broader donation landscape. This research will underpin future planning by NHS BT Tissue Services as they develop their supercentre strategy to increase the supply of both eye and tissue donation.

Research activity codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: GENERIC HEALTH RELEVANCE