The Aortic Dissection Charitable Trust (https://aorticdissectioncharitabletrust.org/) aims to improve the diagnosis of aortic dissection and bring consistency of treatment across the patient pathway. It developed from a national campaign by the family of Tim Fleming, who died after a missed diagnosis of AAS. The trust involves people who have survived AAS and relatives of people who have died from AAS. It promotes education and awareness of AAS and supports research into the detection, prevention, treatment and cure for aortic dissection.
Our research team included two members of the Aortic Dissection Charitable Trust. Valerie Lechene has lived experience of AAS, having received successful treatment for AAS despite delayed diagnosis. She brought her experience of delayed diagnosis to the project and provided a powerful patient perspective of the diagnostic process. Catherine Fowler experienced the loss of her father to AAS in 2015. She brought her insights as a bereaved relative due to AAS and acted as a powerful advocate for victims of AAS who did not survive. Valerie Lechene and Catherine Fowler helped to develop the study proposal, attended project meetings, facilitated contact with other members of the trust, assisted with the development of the decision-analytic model and reviewed emerging findings from the study.
The Aortic Dissection Charitable Trust organised a webinar during project development that 23 of their members attended. The participants shared their experience of AAS diagnosis and identified important issues around interpretation of the risk scores; patient knowledge of risk variables; the importance of family history, gender and ethnicity; the involvement of ambulance services and hospital recording of missed/delayed diagnosis.
We created a patient and public involvement (PPI) group for the project that included 10 survivors of AAS and five relatives of people who had AAS, from members of the Aortic Dissection Charitable Trust and patients identified by clinical investigators involved in the project. The group met quarterly throughout the project to share their experiences of AAS, review diagnostic strategies evaluated in the study, consider assumptions in the decision-analytic modelling, review emerging findings, assist with interpretation of the findings and assist with dissemination.
The Aortic Dissection Charitable Trust assisted with dissemination of the findings to the public through a public webinar on 5 February 2024 and through posting findings on their website and social media.