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Canadian Congenital Heart Alliance

Transition Tools and Resources

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Resources

Health Information Summary

It’s important that your teen carry a Health Summary record in some form at all times. It should include

  • name of cardiac condition and other medical conditions
  • previous cardiac surgeries/interventions and other surgeries
  • name of medications
  • allergies
  • need for endocarditis prophylaxis (Yes/No)
  • names and contact details of health providers (CHD and primary care)
  • other vital info (i.e. low HR, low O2 sat, no pulse in right arm)

What is normal for you and your CHD?

There are many options to achieve this.

Medical Alert bracelet - consider getting a Medic-Alert bracelet as they have 24 hour medical emergency contact available  (www.medicalert.ca)

MyHealthPassport - a health passport is available from the SickKids website  www.sickkids.ca/myhealthpassport

Smartphone apps – most mobile devices have a health app or provide ability to input medical information in case of emergency. Check out these links to learn how to input for your type of mobile device

     https://www.cnet.com/how-to/first-responders-can-help-you-even-when-your-phone-is-locked/

     https://techguylabs.com/blog/put-emergency-info-your-phones-lock-screen

     https://www.gottransition.org/resourceGet.cfm?id=439

Don’t forget to review your Health Information Summary with your CHD healthcare team to make sure you haven’t forgotten anything vital in an emergency.

 

Tools

I Heart Change: helping you make the move to adult care  https://iheartchange.org/

A website designed mainly for young people with congenital heart disease (CHD). Family and friends might also want to check it out

     Alberta Health Services – Peter Loughed Centre – Calgary - meet the team

     Pacific Adult Congenital Heart (PACH) clinic – Vancouver - meet the team

     Toronto General Hospital – Peter Munk Cardiac Centre – Toronto - meet the team

MyTransition App

Created by CanChild at McMaster University, the MyTransition App is a free tool that can be easily accessed and used by the majority of youth with chronic health conditions, in order to support and improve individual transition of care experiences and health outcomes. The software includes the MyHealth 3-Sentence Summary, MyHealth Passport, and TRANSITION-Q as well as a key contact person from the youth’s treating healthcare team to integrate into one’s healthcare. The app provides an easily and readily accessible central location for young adults to track their transition, keep contacts in one place, and improve communication with their healthcare team.

Download free for Apple iOS or Google Android below:

App Store for iOS 

Google Play Store

 

Toolkits

These resources are available to all youth living with CHD (not just those at BC Children’s hospital)

Transition toolkit for youth:   http://www.bcchildrens.ca/our-services/support-services/transition-to-adult-care/youth-toolkit

Transition toolkit for families:  http://www.bcchildrens.ca/our-services/support-services/transition-to-adult-care/family-toolkit

Below is the Congenital Heart Disease Transition of Care tip sheet, developed in collaboration with Heart & Stroke, I Heart Change, Fondation en Couer, Braveheart Support Society and Global ARCH

CHD_Transition of Care tip sheet_EN_pg1CHD_Transition of Care tip sheet_EN_pg2

PDF icon Download CHD_Transition of Care tip sheet_EN_2020.pdf (155.92 KB)

 

Resources from hospitals

BC Children’s Hospital: Transitioning Responsibly to Adult Care

http://www.bcchildrens.ca/our-services/support-services/transition-to-ad...

Children's Hospital of Eastern Ontario (CHEO)

https://www.cheo.on.ca/en/resources-and-support/transition-to-adult-care.aspx

Sick Kids Hospital

http://www.sickkids.ca/go-positive/graduating-from-sickkids/transition-tools-and-adult-appointments/index.html

IWK

http://www.iwk.nshealth.ca/transitions

Got Transition

https://www.gottransition.org/index.cfm

 

For more information about Transition, visit our Transition and Risk page.

To better understand the life stages of transition,read the Transition timeline recommendations

Check out how congenital heart disease stacks up against better recognized diseases in Canada! So many affected and so little awareness and funding! Get involved with CCHA, donate, and spread the word about the growing population of of "survivors" so that we can get the care and support we need to live long, healthy lives!

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