Edward Callus

Research

What I work on, and a selection of the papers.

Most of my research asks a single question in different settings: what happens, psychologically, to people who live with a serious heart condition, and what would it take for the health system to attend to it properly.

What I work on

Congenital heart disease across the lifespan

Children are now surviving heart conditions that used to be fatal, and they grow into adults who carry both the condition and the history of it. I study how those adults actually fare: quality of life, anxiety and depression, how they perceive their illness, what they report about their own care. Much of this work has been done through APPROACH-IS, an international collaboration that has now collected patient-reported data across dozens of countries, which lets us ask which of these difficulties are universal and which are made by the country a patient happens to live in.

The handover from paediatric to adult care

The transfer out of paediatric cardiology is one of the most dangerous moments in a patient's life, and it is largely an organisational problem rather than a medical one. I have worked on international consensus guidance for doing it better.

Illness, surgery and hospitalisation as psychological events

Cardiac surgery, intensive care and rehabilitation each make their own psychological demands, on patients and on the people around them. This includes the clinicians: the psychological load carried by staff is real, it is measurable, and it is usually ignored until it produces attrition.

Trauma, and EMDR

A serious cardiac event can leave genuine post-traumatic symptoms, and they often go unnamed because everyone involved is focused, reasonably enough, on the heart. I work on the use of EMDR in this population, including delivered remotely, and on the evidence base for EMDR more broadly.

Rare disease

I work with patients and families affected by Marfan syndrome, Alström syndrome and hereditary angioedema, on fatigue, quality of life, and the measures we use to capture them. Rare disease concentrates every problem in the paragraphs above and adds isolation to it.

Getting evidence into practice

A good model of psychosocial care that nobody adopts is not a good model. A recurring strand of my work is implementation: consensus recommendations, position papers, and the frameworks that determine whether any of it survives contact with a real service.

Selected publications

A selection, most recent first. The complete record is on the institutional repositories linked below.

The complete record