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Toronto (Dec. 2, 2014) – While survival rates of infants with congenital heart disease has climbed to as much as 90 per cent in recent decades – making it one of modern medicine's greatest success stories – the surveillance of these patients in an adult-care setting remains inconsistent, which was the catalyst for the creation of a new website spearheaded at the Peter Munk Cardiac Centre.
"Many congenital heart disease patients have lapses in care particularly once they enter adulthood," says Dr. Adrienne Kovacs, Clinical Psychologist, Peter Munk Cardiac Centre, who oversaw the website initiative. "Research shows that they are more likely to require a new diagnosis, or need urgent testing to make sure they are on the right medication or have the correct procedures. Through this website, these adult patients can access information that will guide them to ensure they receive optimal care while maintaining regular medical visits," she says.
The website called iheartchange.org enables patients, family and healthcare providers to log in and get information through videos, images and downloads. From information about transferring from pediatric to adult care, to coping skills and medical facts, the website also offers them the ability to learn about members of their Adult Congenital Heart Disease care team.
"As a leading international centre for adult congenital heart disease, we are excited to be able to advance our leadership by providing ongoing excellence in care for these patients through this innovative project," says Dr. Barry Rubin, Medical Director, Peter Munk Cardiac Centre. "This initiative is also a testament to the foresight and vision of the Peter Munk Cardiac Centre Innovation Committee whose decision to fund this project expedited its development and completion," he says.
Based on data culled from a pilot study and created in collaboration with healthcare providers and funding from the Labatt Family Heart Centre at The Hospital for Sick Children (SickKids), iheartchange.org also includes information about Adult Congenital Heart Disease programs at hospitals in Calgary, Vancouver, Cincinnati and Michigan.
"Some adolescents and young adults with congenital heart disease and their families will struggle with the transition to adult care," says Dr. Kovacs, who is also an Adjunct Scientist at SickKids. "They have had the same hospital, the same medical providers for 18 years. It will take a while to develop new relationships with their providers in the adult setting so by introducing that team ahead of time through the website, along with other important information, we think we can make that transition a little easier," she says.
Dr. Adrienne Kovacs, Clinical Psychologist, Peter Munk Cardiac Centre: Video interview
The Peter Munk Cardiac Centre is the premier cardiac centre in Canada. Since it opened in 1997, the Centre has saved and improved the lives of cardiac and vascular patients from around the world. Each year, approximately 55,000 patients receive innovative and compassionate care from multidisciplinary teams in the Peter Munk Cardiac Centre, and the Centre trains more cardiologists, cardiovascular surgeons and vascular surgeons than any other hospital in Canada. The Centre is based at the Toronto General Hospital and the Toronto Western Hospital - members of University Health Network. www.petermunkcardiaccentre.ca
Phone: 416 340 4636