Inherited Heart Rhythm Disorder (Pre-participation) Screening Questionnaire
An underlying genetic disorder is often the cause of sudden cardiac death in young people. These diseases claim as many as 700 young lives in Canada every year. While the exact prevalence of these diseases is unknown most experts would agree that 1 in 500 is not an unreasonable estimate of the number of young people carrying a potentially lethal gene. A good starting point for determining if your child may be affected is to complete both a Patient and Family History.
At important times in every child’s life take a moment to complete this questionnaire.
- When starting Kindergarten
- When starting Grade 5
- When starting a competitive sport
- When starting a prescription drug
- When starting High School
- When starting University
- Anytime you are made aware that your child has fainted
Encourage children to self-report symptoms described in this questionnaire including extreme shortness of breath, palpitations, extreme fatigue and brown-outs during physical activity. Insure that schools, clubs and sport leagues have a mandatory reporting policy for fainting.
Investigate the family history of both parents. When speaking with relatives and long-time family friends ask them if they are aware of any unexplained or presumed cardiac young person deaths in your family tree.
- Any unexplained death of a person under the age of 50 should be considered. Drowning and motor vehicle deaths, especially unexplained single vehicle accidents should be included.
- A key piece of the puzzle for one Canadian family was the story of an 18 year old relative that died from auditory startle – in Italy, in the 1920’s – more than 80 years before the diagnosis
Patient History Questions
- Has this child ever fainted during or shortly after physical activity?
- Has this child ever experienced extreme shortness of breath, extreme fatigue or “brown outs” during physical activity? More so or different than other children?
- Has this child ever fainted as a result of emotional distress or excitement?
- Has this child ever fainted from auditory startle such as an alarm clock, a door slamming or any unexpected noise?
- Has this child ever fainted from any cause?
- Has this child ever sustained an injury as a result of fainting?
- Have any of this child’s faints involved seizure like activity?
- Has this child ever been diagnosed with a seizure disorder such as epilepsy?
Family History Questions
- Is there any history of unexplained early death on either side (maternal/paternal) of this child’s family? Include parents, siblings, grandparents, aunts, uncles, cousins. Go back as many generations as possible.
- More than one early death in the family?
- Unexplained death of family members under age 50?
- Unexplained death of family members under age 35?
- Any deaths occurring during or after intense physical activity? Running, swimming, cycling, soccer, hockey.
- Deaths of undetermined origin or “presumed” cardiac origin
- Are there any SIDS deaths (Sudden Infant Death Syndrome) in the family?
- Are there any deaths attributed to seizure disorder or epilepsy?
- Is there any member of this child’s family that has a history of unexplained fainting or seizures?
I have answered “Yes” to one or more questions
If the answer to any of these questions is “yes” you will want to consult with the child’s physician. The more “yes” answers you have the more important it becomes to see a doctor. If you have a “yes” answer in each of the Patient History and Family History sections you may wish to inquire about a few simple, non-invasive tests such as ECG and Echocardiogram.
If there is suspicion of a possible cardiac rhythm disorder in any member of your family it is important to seek definitive answers. Most of these diseases are inherited through an autosomal dominant gene which means that they affect males and females equally and if one parent carries the gene on average half of their children will acquire the gene and the disease. Positively identifying one family member should begin a process of finding others. Once identified there are a number of available therapies that provide excellent protection against Sudden Cardiac Death.