Title: Improving the quality of care for men with Abdominal Aortic Aneurysms (AAA) who undergo regular screening: reducing the psychosocial consequences of screening and developing a patient-centred Exit Strategy from surveillance
Funder: Department of Health and Social Care

Abstract: BACKGROUND Abdominal Aortic Aneurysm (AAA) is a swelling in the aorta that can increase in size over time and burst. 4000 people die each year in England and Wales from a burst AAA. The National AAA Screening Programme (NAAASP) offers screening to all men aged 65. It invites 300,000 men for scans each year and men with small or medium AAA are kept in surveillance, that is, have regular scans. There are now 15,000 men ‘in surveillance’. Some men and their partners suffer psychosocial consequences of screening such as anxiety, distress, burden from protecting others from worrying, guilt, helplessness, and uncertainty. As men get older they may become unfit for surgery and cannot have treatment but currently there is a very limited Exit Strategy from surveillance. RESEARCH QUESTIONS How can we reduce the psychosocial consequences of being in surveillance in NAAASP? What are men’s preferences for exiting surveillance? DESIGN A mixed methods study with two concurrent work packages (WPs). WP1 follows the MRC guidance on developing and evaluating complex interventions, addressing the first two phases of developing and assessing the feasibility of an intervention to reduce psychosocial consequences of screening. WP2 is a sequential exploratory design of qualitative research followed by a survey to identify men’s preferences for exiting surveillance. AIMS AND OBJECTIVES 1. Understand why and when men ‘in surveillance’, and their partners, experience psychosocial consequences of screening and the types of interventions that might help them. 2. Co-design an intervention to help men to manage negative consequences. 3. Assess the acceptability and feasibility of the co-designed intervention. 4. Identify men’s views (and their partners) about exiting surveillance and the options they think should be available for this. 5. Measure men’s preferences for different aspects of a patient-centred Exit Strategy. METHODS There are two work packages (WPs). In WP1 we will undertake a survey of screening providers (in 38 centres) to identify potential ways to reduce screening-related anxiety. We will also undertake a survey of men ‘in surveillance’ to measure who has psychosocial consequences of screening and when this is worse (n=1200). We will identify men with psychosocial consequences and interview them (n=20-24) and their partners (n=12-20) about what might help them manage anxiety, and when and by whom they would like to be offered help. Then service providers, men and their partners will co-design an intervention. We will create this intervention and test its feasibility and acceptability with 20 men and their partners. In WP2 we will hold a clinical stakeholder group to identify options, and then interview men (n=20-24) ‘in surveillance’ and their partners (n=12-20) about their preferences for exiting surveillance under different circumstances. Then we will undertake a survey of men in surveillance (n=500) to measure their preferences and the intensity of their preferences. TIMELINES 28 month study IMPACT AND DISSEMINATION The findings will feed directly into the NHS E&I AAA Screening Programme Operational Delivery Group and the NHS England & Improvement Screening Programme Board via the Clinical Lead, Nurse Lead, and Research Lead of this programme who are co-applicants. A co-applicant Akhtar Nasim will liaise with other AAA screening programmes in different nations. We will publish in peer-reviewed journals e.g. British Journal of Surgery.

Lay abstract: AIM To improve the quality of care for men who have regular screening to check on the growth of their Abdominal Aortic Aneurysm (AAA). BACKGROUND AAA is a swelling in the aorta, a vessel that runs from the heart down through the chest and stomach. AAA can increase in size and burst. Most people who have a burst AAA die before they get to hospital or do not survive emergency surgery. 4000 people die each year in England and Wales from a burst AAA. Screening can pick up an AAA before it bursts. It saves lives and is cost-effective. The National AAA Screening Programme (NAAASP) offers screening to all men aged 65. It invites 300,000 men for scans each year. Some men have a small AAA and are checked each year to see how much it has grown. Some men have a medium AAA and are checked every three months. There are now 15,000 men ‘in surveillance’, that is, having scans regularly. When men have a large AAA they are offered surgery to stop it bursting. There are two challenges to ensure that the benefits of screening outweigh harms. First, men and their partners can suffer anxiety, distress, burden from protecting others from worrying, guilt, helplessness, and uncertainty. We need to find ways to reduce these problems. Second, as men get older, they may become unfit for surgery and cannot have treatment. We need to understand men’s preferences for leaving the surveillance programme. DESIGN AND METHODS There are two work packages. In the first work package we will develop a new intervention to reduce men’s anxiety. We will do a survey of 150 staff in screening centres to find out what they think would reduce anxiety. We will do a survey of 1200 men in the surveillance programme to find out who is anxious and when this is worse. We will identify 20 men with problems and interview them and their partners about what might help them manage anxiety. Then staff, men and their partners will co-design an intervention. We will make this intervention and assess if men use it and like it. In the second work package we will find out men’s preferences for leaving the surveillance programme. We will interview 20 men and their partners about their preferences for leaving the surveillance programme. Then we will do a survey of 500 men to measure their preferences. We will feed this into NAAASP to help them develop a patient-centred Exit Strategy. PATIENT AND PUBLIC INVOLVEMENT (PPI) Our PPI co-applicant is a PPI member on the NAAASP Research Committee. We have talked to four men who have been in the screening programme or had treatment for AAA to help us develop this project. We will form one of the first PPI groups in this research area. This group will work with our study and future studies. The group will meet 10 times and be involved in the co-design of the intervention. Two PPI members will sit on the Project Oversight Group. DISSEMINATION The findings will be considered by the NHS England & Improvement AAA Screening Programme Operational Delivery Group and the NHS England & Improvement Screening Programme Board.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: CARDIOVASCULAR;MENTAL HEALTH