New program treats people with inherited heart rhythm conditions to prevent sudden death

November 22, 2013, Vancouver, BC – A new heart program in British Columbia will improve the overall care of families living with an inherited heart rhythm condition.

The newly launched BC Inherited Arrhythmia Program (BCIAP) combines the expertise of specialists in adult and pediatric cardiology as well as medical genetics to identify, screen and manage families affected by inherited heart rhythm conditions. By providing this new model of care, the BCIAP is improving patient access to ‘cardiogenetic’ services and continuity of care for patients and families at risk in BC.

It's a privilege to be part of such a great team whose goal is to prevent tragedies and focus on healthy living for British Columbians,” said Dr. Andrew Krahn, heart rhythm specialist, co-medical director of the BCIAP and head of the UBC Division of Cardiology.  “The team represents a terrific blend of skills to focus on families and the recognition of these potentially serious heart problems, delivering effective prevention to stamp out sudden death.”

Having an inherited heart rhythm condition places a person at risk for a sudden cardiac arrest.  A sudden cardiac arrest is a condition where the heart suddenly stops beating properly and can cause death if not treated within minutes.  However, if this risk of sudden death is known, it can be prevented through the use of medications and, for some patients, implantable defibrillators. Genetic counselling, genetic testing and specific heart testing can be offered to help identify at risk patients and family members.

Keith and Anne Hatlelid connected with the program after the sudden, unexpected death of their 19-year old son. Subsequent testing has revealed that it is probable that his death was caused by an inherited heart rhythm condition.

Your worst fear is that it’s going to happen again. It's something that you don’t want to even think about, but it becomes something new that you worry about every day,” said Anne Hatlelid.  “The fact that somebody understood this fear and was committed to working with us to do everything possible to reduce the risk that our family and other families will experience this type of loss has provided us with a great deal of comfort.”

The most common inherited heart rhythm conditions are Long QT syndrome (LQTS), Brugada syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia (CPVT) and Arrhythmogenic Right Ventricular Cardiomyopathy (ARVC). Together, these conditions affect approximately 7,000 British Columbians.

In recent years we have witnessed remarkable advances in genetic knowledge which have provided new hope for those individuals and their families affected with inherited arrhythmia conditions,” said Dr. Laura Arbour, medical geneticist, co-medical director of the BCIAP, clinical director for Island Health Medical Genetics.  “We believe a collaborative approach between medical genetics and cardiology is essential to provide optimum service delivery and are proud to offer British Columbians our collective skills, as we work towards the goal of reducing their risk of sudden cardiac death.”

BCIAP patient appointments will be held either at St. Paul’s Hospital in Vancouver or Royal Jubilee Hospital in Victoria. Pediatric heart rhythm specialists from BC Children’s Hospital attend regular clinics at both sites to accommodate adults and children in a family. Pediatric appointments may also be coordinated at BC Children’s Hospital.  Further, because LQTS is common in some First Nations communities in Northern BC, clinics are also being held at the Wrinch Memorial Hospital and the Nisga’a Health Centre.

In addition to providing excellent patient care, the program will also raise awareness and provide educational opportunities for healthcare providers and the public. Internationally recognized investigative research will lead to new discoveries designed to improve the diagnosis and treatment options available to those affected by inherited heart rhythm conditions.

The Specialist Services Committee, a partnership of the BCMA and the Ministry of Health, granted approximately $500,000 in funding for the program, and Cardiac Services BC will support the ongoing sustainability of the provincial program in collaboration with regional health authorities.  It is delivered jointly by Providence Health Care, Island Health, and the Provincial Health Services Authority.

Anyone concerned about their family history of an inherited heart rhythm condition or sudden unexplained death should discuss this history with their family doctor who can determine if a referral to the BCIAP is indicated.

Providence Health Care (PHC) is one of Canada's largest faith-based health care organizations, operating 16 health care facilities in Greater Vancouver. PHC operates one of two adult academic health science centers in the province, performs cutting-edge research in more than 30 clinical specialties, and focuses its services on six “populations of emphasis”: cardio-pulmonary risks and illnesses, HIV/AIDS, mental health, renal risks and illness, specialized needs in aging and urban health and is home to the B.C. Centre for Excellence in HIV/AIDS.  For more information visit www.providencehealthcare.org.

Island Health, one of six health jurisdictions in British Columbia, provides health care and support services to more than 765,000 people on Vancouver Island, the islands in the Salish Sea and the Johnstone Strait, and mainland communities north of Powell River. With more than 18,000 staff, 1,900 physician partners, 6,000 volunteers, and the dedicated support of foundations and auxiliaries, Island Health delivers a broad range of health services, including: public health services, primary health care, home and community care, mental health and addictions services, acute care in hospitals, and much more across a huge, geographically diverse region.

The Provincial Health Services Authority operates nine agencies that provide province-wide specialized health care services including BC Children’s Hospital and Cardiac Services BC, both of which  are directly involved in the planning, coordination, monitoring, evaluation and funding of the provincial inherited arrhythmia program. For further information visit www.phsa.ca.

For more information or to arrange an interview:

Media Contacts:

Dave Lefebvre
Senior Communications Specialist – Media Relations
dlefebvre@providencehealth.bc.ca
604-682-2344 xt. 66987

Sarah Plank
Media Manager
Island Health
sarah.plank@viha.ca
250-727-4275

BACKGROUNDER

New program treats people with inherited heart rhythm conditions to prevent sudden death

Quick Facts:

  • Approximately, 7,000 people living in BC have an inherited heart rhythm condition, which predisposes to sudden cardiac arrest and sudden death.
  • Symptoms of inherited heart rhythm conditions can include palpitations, sudden fainting, cardiac arrest, and sudden death.
  • If a diagnosis is known, sudden death due to inherited heart rhythm conditions can be prevented through the use of medications and/or implantable defibrillators.
  • Inherited heart rhythm conditions can affect some family members more seriously than others. Some may experience little to no symptoms but remain at risk.
  • Serious symptoms are most often seen in teenagers or young adults but can begin at any age, especially in conjunction with ‘triggers’ such as intense exercise, varying emotions or medications that might increase risk. 

Referral Criteria:

  • An individual with a suspected or known diagnosis of an inherited heart rhythm condition (Arrhythmogenic Right Ventricular Cardiomyopathy, Long QT syndrome, Catecholaminergic Polymorphic Ventricular Tachycardia, Brugada syndrome).
  • An individual with a  personal history of an unexplained sudden cardiac arrest.
  • An individual with a family history of an inherited heart rhythm condition.
  • An individual with a  family history of sudden unexplained death in a first degree relative*, including those with a negative autopsy, or sudden infant death syndrome (SIDS)

*Referrals for a family history of sudden unexplained death in a close relative will also be considered.

About BCIAP:

The BC Inherited Arrhythmia Program (BCIAP) aims to provide state-of-the-art care to families affected by inherited heart rhythm conditions through partnerships, innovation, and advocacy. BC families affected by heart rhythm conditions will receive coordinated multidisciplinary care and support through the BCIAP.  The program will raise awareness and provide educational opportunities for healthcare providers and the public. Internationally recognized investigative research will lead to new discoveries designed to improve the diagnosis and treatment options available to those affected by inherited heart rhythm conditions.

The BC Inherited Arrhythmia Program is funded by Cardiac Services BC, an agency of the Provincial Health Services Authority, and the Specialist Services Committee, a joint collaborative committee of the British Columbia Medical Association and the Ministry of Health.  It is delivered jointly by Providence Health Care, Island Health, and the Provincial Health Services Authority.

For more information or to arrange an interview:

Media Contacts:

Dave Lefebvre
Senior Communications Specialist – Media Relations
dlefebvre@providencehealth.bc.ca
604-682-2344 xt. 66987

Sarah Plank
Media Manager
Island Health
sarah.plank@viha.ca
250-727-4275