A general practice intervention targeting registration on the NHS Organ Donor Register

Abstract

Background: There is a shortage of organs for transplant in the UK. Family consent is a critical part of the organ donation pathway, and prior knowledge of a person’s wishes makes this decision easier for families. The most effective way to express organ donation wishes is through registration as an organ donor. General practice is an underutilised setting for organ donation interventions, and is the only NHS setting which can put people directly on the organ donor register. Therefore, interventions could be developed in this setting to maximise the opportunities for UK residents to register their request to donate their organs after death. This thesis aims to explore this by developing and evaluating the feasibility of a general practice intervention designed to increase organ donor register sign-up in the UK. Methods: A literature review, systematic review, and theoretical review were conducted to establish a basis for the intervention. Intervention Mapping was then used to develop it based on these empirical and theoretical findings. Based on the IIFF model of organ donation registration, the intervention consisted of three parts; staff training, asking patients in consultations if they wished to join the NHS Organ Donor Register (prompted choice) and the provision of leaflets and posters in the waiting room. A single practice feasibility study was conducted to assess five dimensions; recruitment, data collection materials, resources, acceptability, and intervention promise. Intervention mapping was revisited to refine the intervention based on the single practice study findings. Results: Staff conducted prompted choice on 12.4% of face to face consultations they had with patients over three months, with 214 patients joining the NHS ODR. Some staff found prompted choice both feasible and acceptable, with opinions dependent on staff professional role. Responses to the training sessions were positive; however, although leaflets and posters were found to be feasible and acceptable, the majority of patients did not notice them. Significant challenges to implementation were found with SystmONE the practice software, the NHS Ethics process (particularly the confidentiality advisory group) and recruitment of practices. These resulted in the ultimate abandonment of a planned multi-practice feasibility randomised controlled trial. Conclusion/Discussion: These findings were positive and indicated that general practice could be an acceptable location to provide the facility to join the NHS ODR in the UK verbally. However, due to implementation issues, consideration is required as to how best to test the intervention further for feasibility. Recommendations include conducting a larger feasibility randomised controlled trial with more resources (people and financial), to help aid recruitment and the implementation of the required SystmONE elements. Contribution to Knowledge: This is the first academically tested intervention allowing people to sign-up to the NHS ODR verbally, and one of the first organ donation interventions in UK general practice. It is also the second intervention internationally to use Intervention Mapping for organ donation behaviour, and this thesis adds to the evidence base in each of these areas.