Organ Utilisation Group recommends “standardised patient pathways” for transplantation

A report has been issued on methods for improving organ provision by the Organ Utilisation Group (OUG), a UK Department of Health-established body dedicated to making “recommendations on how to maximise the potential for organ transplantation from living and deceased donors”. The review, which was limited to England’s health services, focused on the transplantation procedure from the offer of an organ through to post-transplant care.

The authors of the report drew on patient focus groups and online surveys in building their “evidence base”, while also performing visits to transplant centres and meetings with both UK-based and international “expert advisors”. A literature review was also integrated into the report.

The report’s primary finding was that patients described concerns that the quality of care they received was tied to where they lived, as well as “their socio-economic status and their ethnicity”. They are also given incomplete or even contradictory advice on transplant procedures, while some patients expressed feeling “lost in the system” when moving between different parts of the health service.

In response to these issues, the OUG recommends that patients being considered for transplantation, referral or listing should receive better advice and support, while there should be a renewed focus on providing “equal access” regardless of location or other factors such as ethnicity, “personal circumstances” or gender. To achieve this, the authors state, communication with patients must be “timely” while information about centres’ performance should be easily accessible.

The report’s second recommendation is for transplant centres to better integrate the feedback of patients into how they operate. This, it argues, can be achieved through regular meetings between patients and their clinical team, while patient-reported outcomes and experiences should be evaluated “with similar levels of focus and scrutiny” as clinical outcomes, with the measures themselves developed with patient input.

One of the report’s most notable recommendations was for the development of standardised patient pathways for each organ type, each with “well-defined timescales” for every part of the pathway. Decline meetings should be a “mandatory requirement”, while standards should be developed to prevent lack of theatre availability and other non-clinical reasons for organ procedures failing to go ahead. The report also recommends a “Clinical Lead for Utilisation who is responsible for data oversight and monitoring” in every unit. Regular meetings of units to discuss ways to improve organ provision, drawing on data, should also be performed.

The National Health Service (NHS) in England should also perform a “comprehensive review of cardiothoracic services” to ensure their sustainability and “resilience”, the authors argue. They add that the use of international benchmarking and patient outcome data, which is held by NHS Blood and Transplant (NHSBT), will make up an important part of that review’s evidence.

Moving on to discuss the NHS workforce, the OUG describes how a “lack of a clear workforce template” affects the consistency of care received by patients in different units. Transplant teams described their struggles with recruiting and maintaining staffing levels. Clinicians in transplant units also deal with stress and even mental health issues as a result of the insufficient support with which they are provided. As a solution, the report proposes workforce planning toolkits, which would help allocate staffing to centres according to local demographic information including waiting list size and catchment area. These toolkits may incorporate algorithms used to support planning. Patients should receive psychological and social care support before and after a procedure.

Data was a theme highlighted later in the report, with the digitisation of paper-based records a particular focus. This digitised data should then be integrated as part of the decision-making in the standardised patient pathways recommended elsewhere in the report. This will also support the development of national multi-organ centres, which makes up another major recommendation of the report. This, the authors argue, will help introduce “new techniques into everyday clinical practice as rapidly as possible”, while also maximising organ availability. They should also be supplemented with a “national oversight system” for “assessment, perfusion and preservation”, which it is argued would be especially important for perfusion that starts or occurs in situ.

“National measurable outcomes must be defined and agreed”, the authors argue, as a means of measuring the success of new organ initiatives. “Optimal” organ utilisation demands a more specific definition, while new means of educating patients and families should be developed to ensure they fully understand outcomes. In a similar vein, service specifications should be better defined, smoothing the relationship between NHSBT and commissioners, while a financial framework should be used to cost the patient pathway and assist modelling of future costs and demand.

Commenting in the OUG report, transplant surgeon and clinical lead for organ utilisation in kidney transplantation Nicholas Inston at the Queen Elizabeth Hospital Birmingham (Birmingham, UK) states: “A major concern is the transplant workforce and the current requirements to deliver a service over the next few years are unclear. To achieve sustainability and resilience in delivering transplantation will require planning—defining standards for staffing and facilities would be a valuable outcome from the OUG.” Inston spoke to Renal Interventions to add: “The OUG report sets out the structure and changes that will be required to implement the Organ Donation and Transplantation 2030: Meeting the Need strategy, which sets out a ten‐year vision for organ donation and transplantation in the UK.” This, he notes in the report, “will require improvements in efficiency and application of innovative solutions”.

Looking forward, the report authors say that putting their proposals into action will require the work of “a wide range of organisations”, including many NHS trusts as well as NHSBT. Finally, they say engagement with patients, families, carers and living donors, which underpinned the report, should be performed throughout the organ transplantation process.