Title: Mixed methods co-design and evaluation of a DECIsion Support Tool to enable shared Decision making for people who are considering cascade screening for Thoracic Aortic Disease: The DECIDE TAD Programme.
Funder: Department of Health and Social Care

Abstract: Development work question Will the implementation of a Decision Support Tool (DST) improve shared decision making, health outcomes, and be cost effective, in people at risk of non-syndromic Thoracic Aortic Disease (TAD) who are offered cascade screening for causal genetic mutations and latent aneurysmal disease? Background TAD kills almost 3000 people in the UK every year; more than road traffic accidents. Up to 20% of cases are caused by known genetic mutations. The genetic aetiology and lethality of TAD support familial cascade screening for disease causing genetic mutations or asymptomatic TAD (aneurysms). This enables targeted secondary prevention and treatments that pre-empt fatal aortic dissection. In syndromic TAD (e.g. Marfan Syndrome) this approach has increased average survival by >25 years. However, cascade screening is not routine in non-syndromic TAD, which accounts for 80% of all cases. We have identified regional variation in care, limited information on the disease for patients and doctors, and low uptake, as barriers to the successful implementation of cascade screening in TAD. We plan to address this through the co-design and evaluation of a Decision Support Tool to improve shared decision making and equity of care for people at risk. Aims and objectives The overarching aim of the development work is to inform the logic model that describes the co-design and evaluation of the DST in the main programme. Specific objectives are: To initiate a programme of stakeholder engagement to define the scope of the intervention and the Programme Grant for Applied Research. To ensure the DST addresses health inequalities that impact on care and outcomes in people with TAD. To develop evidence-based treatment guidelines that will underpin the information included in the DST. To document and assess the extent of the possible barriers to individual and organisational implementation of cascade screening, and to identify how the DST will support his. Development work plan Work Package 1: A modified Delphi exercise with key stakeholders to inform the scope of the DST and toolkit co-design, investigation plan, logic model, and dissemination strategy for the main programme. Work Package 2: A retrospective longitudinal study using Hospital Episode Statistics to assess the associations between health inequalities, care, and clinical outcomes, in people with TAD. Work Package 3: A systematic review of studies that have evaluated cascade screening, prevention, and surveillance, for people at risk of TAD. Guideline development will use the Grading of Recommendations Assessment, Development and Evaluation approach. Work Package 4: A study to identify barriers/facilitators to the implementation of cascade screening and DST enabled shared decision making using surveys, structured interviews, with key stakeholders, and process maps, and to prepare good practice and guidelines for a planned Implementation Toolkit. Timelines for delivery The development work will be completed in 12 months. A Phase 1 PGfAR application will be submitted at 18 months. Anticipated impact and dissemination The PGfAR will co-design and evaluate a new DST and implementation toolkit for people who are offered cascade screening for TAD.

Lay abstract: Aim This research is the first step in designing a tool to help people at risk of Thoracic Aortic Disease decide if they want screening, monitoring and if necessary, treatment to prevent Aortic Dissection. Background The Aorta is the body s largest artery. It carries blood from the heart to the brain, limbs, and organs. Thoracic Aortic Disease (TAD) weakens the Aorta in the chest, so it enlarges or tears. A tear is known as Aortic Dissection , which kills 2,800 people a year in the UK &ndash; more than road traffic accidents. Screening and monitoring of people with TAD helps doctors prevent dissection. Our partnership with the national patient association Aortic Dissection Awareness UK & Ireland began two years ago. Patients told us our research is needed to provide evidence to improve care. It addresses seven of the national research priorities they agreed with the Department of Health. We will design a Decision Support Tool that gives patients and families everything they need to make shared decisions about screening for TAD with their doctor. Once done, we will apply for a Programme Grant for Applied Health Research to build and implement the tool and evaluate how well it works for patients, families, and the NHS. Design & Methods We have four work packages: Define the scope and plan for the Decision Support Tool with experts, providers and patients. Analyse existing data about care and outcomes in TAD, to understand if quality of care is a postcode lottery or if there are disadvantaged groups. Review the evidence about screening, monitoring and prevention for people at risk of TAD. Identify barriers to the NHS and patients implementing cascade screening and Decision Support Tools and plans to overcome them. Patient and Public Involvement This work is co-led by Prof. Gavin Murphy and Mr. Gareth Owens, Chair of the national patient association and an Aortic Dissection survivor. It arose out of a Patient & Public Involvement day in Leicester attended by 160 patients, relatives, clinicians and researchers. Aortic Dissection Awareness UK & Ireland is a full partner and has committed a team of patients and relatives to support the research. This team contributes to every aspect of the research and reviews all plans, designs and outputs. Patients are at the heart of this research. Dissemination Our UK-wide team of experts, providers and patients will help us share results. We will present our work at Aortic Dissection Awareness Day UK and other patient events. Together, we will write an application for a Programme Grant to build and evaluate the Decision Support Tool. This will enable us to disseminate the benefits of our research, helping people at risk of TAD to access screening, monitoring and prevention.

Research activity codes: 7.3 MANAGEMENT AND DECISION MAKING
Health categories: CARDIOVASCULAR