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Transitioning Responsibly to Adult Care

Transitioning Responsibly to Adult Care. Sandy Whitehouse MD swhitehouse@cw.bc.ca Mary Paone MSN mpaone@cw.bc.ca. Scope of the Problem for BC. In BC, 7% of all teens between 11 and 19 years live with a CHC/special needs. 98% of children with CHC will now live into adulthood.

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Transitioning Responsibly to Adult Care

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  1. Transitioning Responsibly to Adult Care Sandy Whitehouse MD swhitehouse@cw.bc.ca Mary Paone MSN mpaone@cw.bc.ca

  2. Scope of the Problem for BC • In BC, 7% of all teens between 11 and 19 years live with a CHC/special needs. 98% of children with CHC will now live into adulthood. More young adults in adult CF program than at BCCH 1% babies born with CHD 24% of men with MD live beyond 25 yrs

  3. Transfer Issues • 50% attend first and 30% attend 2nd adult appointment • Increase use of emergency services & walk-in clinics • Deterioration in health status • Increase in psychosocial issues • Death

  4. What are the Reasons • Youth and families not prepared • Problems with transfer of medical information • Lack of adult sub-specialists • Lack of engaged primary care physicians • Do not want to leave pediatric team • Adult system completely different • Additional issues for developmentally delayed; housing, care, care-giver burnout.

  5. What does all this mean? Meet Jocelyn Tomkinson – a young lady who has grown up with – but not limited by - Spina Bifida Jocelyn's Journey Video

  6. Finding THEIR Voice! • Interview 5 people each between the ages of 18-24 years or their parents • Script and video with written consent • Some with/without a chronic health condition • “A condition that they live with requiring medications/ treatments/ doctors appointments – may have a disability”.

  7. Types of questions to ASK? • First name, sex, age, health condition (Parent of). • What kinds of health information do you need to look after yourself – how does it come at you? • How do you want to receive/ store/ retrieve/ share / access / interface with the HC system • If you have had a chronic condition or a parent – how did you say good-bye, what helped you move on to adult care, what was missing?

  8. How can we connect with Youth & Young Adults When they do not want to be seen as ‘different’?

  9. How do we connect now and in the future? How do we engage today’s youth/young adults? Within the topic of their health care? What devices/portals will we be using to access our heath care information now and in 10 years? (electronic/ in person/ in print…) What devices/ portals are/will be accessible to youth/young adults & families? Technology – Medications – Appointments – Reminders - Tracking our Health

  10. How your work will Matter! ON TRAC Transitioning Responsibly to Adult Care • A provincial Initiative guiding health care services for youth and young adults throughout BC • Policy Statements for the BCMA, College of Physicians & Surgeons, UBC Depart of Medicine • Emily Carr will provide the youth voice • How we engage and develop tools and resources for youth, young adults, families and care • A 4 year project – year one complete

  11. Just Ask Me http://www.thegutsygeneration.ca/site/c.buLTK7OQLpK8E/b.6247843/k.C798/Connect.htm http://diabetescommunity.dlife.com/diabetes-teen-talk/ http://www.maestroproject.com/ http://www.sickkids.ca/myhealthpassport/

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