Judges’ comments: This was an interesting, well-reported story about how congenital heart disease patients are falling through the system as adults. It identifies the need to provide these patients with more coordinated care and perhaps even develop a new cardiac specialty devoted to their care.
List date(s) this work was published or aired.
April 12, 2011
Provide a brief synopsis of the story or stories, including any significant findings.
Where once they died young, most of the 1 percent of children born with congenital heart defects in the western world now survive to adulthood and need to be followed long term. But the majority falls off the radar when they become young adults, in part due to a lack of doctors skilled in adult congenital heart disease. This will have devastating consequences for these young adults, many of whom will not get the care they need. As a result, many will suffer unecessarily or even die prematurely.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I accessed a number of medical papers on the subject from the literature, including task force recommendations. I also consulted patient care organizations in the US, UK and Canada.
Explain types of human sources used.
The feature was based on interviews with cardiologists specializing in congenital heart disease, who have been highlighting this issue of when children ‘transition’ to adults, including a visit to a center in London. I also interviewed a young adult with congenital heart disease,
Results (if any).
The patient I interviewed was lucky enough to have been ‘caught’ at the dentists, when she developed an infection. This patient had seen no-one about her congenital heart disease for approximately 8 years. As a result, she had more corrective surgery for heart defects, which should improve her symptoms. She was also reasssured that there is no reason she should not be able to have children. By bringing attention to her plight in particular, and the issues in general, I hope to have increased awareness of this issue among the medical profession and policy makers. Hopefully, this will result in fewer teenagers ‘falling through the net’ when they reach 18, ensuring they continue to receive the best care possible for their congenital heart disease. Hopefully, it will also encourage more physicians to train in the discipline of adult congenital heart disease, and more places to run programs in this discipline.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
No
Advice to other journalists planning a similar story or project.
Speak to as many people as you can who have an interest in the topic you are writing about, ideally including those who are directly affected by it, and ask each one for recommendations as to who else you might speak to. If relevant, ask them if there is anyone who would disagree with what they are saying, and try to track down some alternative viewpoints. Think broadly: there is usually a center ‘core’ of information, but then many roads leading off this that you can explore.