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

Long-Sutehall T, Bracher M, Mollart S, Wale J
Record ID 32018005317
Authors' objectives: Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue. To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users’ views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation. Globally, the estimated number of visually impaired people is reported by the World Health Organization (WHO) to be 285 million, with 39 million individuals recorded as blind, and 246 million as having low vision. According to Pascolini and Mariotti, over 10 million of those reported as blind have bilateral corneal blindness, which could be restored with a corneal transplant. However, these individuals do not have access to sight-saving and sight-restoring transplantation surgery owing to a shortfall in supply of tissue (cornea and sclera) that is only available via eye donation (ED). According to the Royal National Institute of Blind (RNIB), over 2 million people in the UK have sight loss caused by conditions such as keratoconus and Fuchs’ corneal dystrophy, which can be treated if eye tissue is available (e.g. by corneal transplantation and reconstructive surgery). Eye tissue is also needed for research into a wide variety of diseases, for example, endothelial failure post cataract surgery. The RNIB reports that approximately 5000 corneal transplants are required annually in the UK to address disease and injury resulting in sight loss, with costs to the UK economy (through unpaid carer burden and reduced employment rates) reported as £4.34 billion annually. Critically, this organisation predicts that by 2050, the number of people with sight loss will double to nearly 4 million in the UK mainly owing to an aging population. It is, therefore, imperative that the tissue needed to intervene in these conditions and to support research into the causes and treatment of eye disease is available. The National Health Services Blood and Transplant (NHSBT) Tissue and Eye Services (TES) Bank in Speke, Liverpool (who supply most eyes for UK surgery) aim to achieve a weekly stock of 350 eyes so that they can provide 70 eyes every working day for treatment or research. From April 2021 to March 2022, donation of eyes from all sources (solid organ donation, tissue donation) generated 4555 eyes from 2286 donors equating to only 13 eyes per day and 88 eyes available per week. Significantly, the actual number of people waiting for a corneal transplant is difficult to confirm, as there is no centralised waiting list for patients who need a corneal transplant (unlike solid organ donation). A further pressure on the nationally reported donation rate of 4555 eyes is that approximately 30% will be discarded due to infection/viruses, with supply further compromised by a 28-day limit to storage requiring disposal of tissue thereafter. Therefore, as the current supply of eye tissue is insufficient to meet the demand, new routes of supply are needed. As hospice care (HC) and hospital-based palliative care (HPC) services have been reported as potential donation sources, the ED from palliative and hospice care contexts: investigating potential, practice, preference and perceptions (EDiPPPP) study investigated the potential of these locations to meet the current supply deficits.
Authors' results and conclusions: Potential: The retrospective notes review demonstrated that of 1199 deceased patients’ notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. Perceptions: Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. Preferences: Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention STEPS – Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential. The retrospective note review (WP1) indicated significant potential for ED across HC and HPC settings. Of the 1199 deceased patient case notes, 46% (n = 553) were agreed as being eligible for referral for ED [in HC settings 56% (n = 337) of cases and in HPC 36% (n = 216) of the cases were agreed as eligible]. Twenty-four per cent (n = 289) of all the cases were agreed as ineligible. In
Authors' recommendations: Evaluation of the STEPS. Research exploring the wider publics’ knowledge and views regarding ED. Research exploring cultural views regarding Deemed Consent legislation. Research exploring the use of language by NHSBT-TES in their public facing infographics, communications and campaigns (specifically the use of the term Eye Donation).
Authors' methods: A 36-month mixed-methods, multicentre study undertaking three work packages. Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region). Work package 1 – 105 service providers. Work package 2 – 62 service users, and 156 service providers in the national survey. Work package 3 – 21 expert consultees (patient and public involvement, cross discipline). Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%). Eye donation from palliative and hospice care contexts: investigating potential, practice, preference and perceptions was structured in line with the six steps in quality intervention development (6SQuID) framework. Study design used mixed methods, applying theoretical perspectives and intervention mapping methodologies to deliver three interlinked and developmental work packages (WP). Literature review, retrospective note review (WP1), interviews/focus groups (WP1 and 2), participant observation (WP1), secondary analysis of primary data (WP2), national survey (WP2), transparent expert consultation (WP3). Work package 1 – 105 healthcare professionals (HCPs) participated in interviews or focus groups. WP2 – 62 service users participated in interviews, 156 service providers participated in the national survey. WP3 – 21 expert consultees [patient and public involvement (PPI), cross-discipline HCP, stakeholder groups] participated in the transparent expert consultation (TEC).
Project Status: Completed
Year Published: 2023
URL for additional information: English
English language abstract: An English language summary is available
Publication Type: Full HTA
Country: England, United Kingdom
MeSH Terms
  • Directed Tissue Donation
  • Corneal Transplantation
  • Palliative Care
  • Terminal Care
  • Hospice Care
  • Tissue and Organ Procurement
  • Cornea
Organisation Name: NIHR Health Services and Delivery Research programme
Contact Address: NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
Contact Name: journals.library@nihr.ac.uk
Contact Email: journals.library@nihr.ac.uk
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