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Transition Program Resources

Patients 12-14 years old

  • Patients should be able to:
    • Understand diagnosis
    • Recognize bleeding
    • Understand different roles of comprehensive care team

 

  • Patients should be able to:
    • Know medication names
    • Help with preparation and administration of medication

 

  • Resources:
    • Ask at your next appointment for more information!
  • Patients should be able to:
    • Understand the importance of having a medical alert
    • Know the name and phone number of treatment center

 

  • Patients should be able to:
    • Know the signs of joint and muscle bleeds

 

  • Patients should be able to:
    • Know who to tell if injury, pain, or bleeding occurs
    • Participate in discussion of surgeries, procedures, and dental care
    • Assist in providing emergency letter, travel letter, and surgical or dental recommendation letters

 

Patients 15-18 years old

  • Patients should be able to:
    • Understand complications of bleeding
    • Understand treatment options
    • Understand mechanism of action of medications

 

  • Patients should be able to:
    • Know medication history, name, dose, frequency, and storage requirements
    • Prepare and self administer medication

 

  • Patients should be able to:
    • Understand the importance of having a medical alert
    • Have a basic understanding of HIPAA
    • Know the name of insurance and primary subscriber
    • Explain what information can be shared with others and under what circumstances

 

  • Patients should be able to:
    • Know the PRICE interventions for acute bleeds
    • Know activity recommendations

 

  • Patients should be able to:
    • Set goals for assisting with self-administration of medication
    • Participate in discussion of surgeries, procedures, and dental care
    • Assist in providing emergency letter, travel letter, and surgical or dental recommendation letters

 

Patients 19-22 years old

  • Patients should be able to:
    • Understand emergency situations
    • Explain genetics of hemophilia
    • Understand the impact of factor level
    • Understand how healthy lifestyle choices impact hemophilia management

 

  • Patients should be able to:
    • Name Primary Care Provider

 

  • Patients should be able to:
    • Understand the importance of having a medical alert
    • Have basic knowledge of how insurance works
    • Know the name of their insurance plan and identify the primary subscriber
    • Explain what information can be shared with others and under what circumstances

 

  • Patients should be able to:
    • Understand a Physical Therapist’s role at an HTC for bleeding symptoms and interventions
    • Know when it is safe to return to activity using bleed recovery checklist

 

  • Patients should be able to:
    • Understand available research trials for the diagnosis

 

  • Patients should be able to:
    • Discuss surgeries, procedures, and dental care
    • Provide emergency letter, travel letter, and surgical or dental recommendation letters
    • Continue to set goals for self-administration of medication

 

  • Patients should be able to:
    • Schedule own appointments

Patients 23-26 years old

  • Patients should be able to:
    • Explain diagnosis, impact of factor level, and genetics
    • Independently implement appropriate treatments
    • Understand risk factors of cardiovascular disease in adults

 

  • Patients should be able to:
    • Know storage requirements, including how to travel with medications
    • Prepare updated medication list prior to appointment
    • Identify and monitor the expiration date of medications

 

  • Patients should be able to:
    • Understand the importance of having a medical alert
    • Know the name of their insurance plan and identify the primary subscriber
    • Have basic knowledge of how insurance works
    • Explain what information can be shared with others and under what circumstances
    • Know if they are covered under a parent’s insurance plan and when they will age out of coverage

 

  • Patients should be able to:
    • Understand the importance of lifelong fitness and joint protection
    • Recall signs of joint/muscle bleeds and PRICE interventions

 

  • Patients should be able to:
    • Understand available research trials for the diagnosis

 

  • Patients should be able to:
    • Understand genetics of bleeding disorder and impact on family relationships
    • Discuss surgeries, procedures, and dental care
    • Provide emergency letter, travel letter, and surgical or dental recommendation letters
    • Continue to set goals for self-administration of medication

 

  • Patients should be able to:
    • Fill out own demographics