Transitioning to adult care checklist for patient with epilepsy

The below items are recommended to be completed 3-6 months before anticipated transition date.

  • Release of Information signed with Children's
  • Your Children's provider will assist you in identifying a new provider and discuss the transition with you and your child
  • Updated patient demographic data shared with Children's
  • Medical information prepared
    • Health Summary
    • 3 recent routine visit notes
    • Green laboratory form
  • Eligibility documents
    • Insurance card
    • Picture ID
    • Proof of residence (utility bill with postmark) 
    • Proof of income, or letter of support
  • Initial appointment with adult provider made

Transition skills

In addition to the checklist items above, it is important for you and your child to complete the recommended transition skills. Your Epilepsy Care Team will work with you and your child to address each goal.

Time 1

(to be completed by Age 14-17)

Skills to be mastered:

  1. Interact directly with health care team (e.g. answer questions, participate in decision-making).
  2. Know what type of seizures you have.
  3. Be able to describe your recent/current symptoms.
  4. Name your medications and their doses including folic acid and vitamin D.
  5. Name the main purpose of each medication.
  6. Be able to give at least a brief description of your medical history. Demonstrate awareness of health-related rights (e.g. privacy, communication, etc).
  7. Consider whether to sign release of information to parent/guardian.
  8. Be able to independently obtain refills.
  9. Be able to identify members of health team/ how to contact them.
  10. Verbalize when/how to call health care provider.
  11. Be able to make own appointments.
  12. Verbalize when/how to access urgent care.
  13. Be able to set up transportation for appointments

Tips for learning Time 1 Skills

  • Interact directly with health care team

    Example: answer questions, participate in decision-making

    Strategies:

    • Practice talking to the doctors and nurses you feel most comfortable with
    • Don’t be afraid to ask questions when you don’t understand.
    • Know your rights as a patient
    • Go to a parents’ medical appointment and watch how they interact.

  • Know what type of seizures you have

    Strategies:

  • Be able to describe your recent/current symptoms in relation to seizures.

    Strategies:

    • Practice describing symptoms. 
    • Keep track of any changes in symptoms as they happen (e.g. in a notebook).

  • Name your medications and their doses including folic acid and vitamin D

    Strategies:

    • Use MyMedSchedule to track your doses and print a schedule.
    • You do not have to memorize it. You just have to show how your remember them (e.g. a schedule, a list).

  • Name the main purpose of each medication.

    Strategies:

    • Ask your pharmacist/nurse/doctor. 
    • Do some research (MedActionPlan) or other medication websites

  • Be able to give at least a brief description of your medical history.

    Strategies: 

    • Keep a small note card or notebook with major parts of your medical history. 
    • Look into creating a “healthcare passport”. 
    • Ask your parents or nurse/coordinator to help you put together your medical history.

  • Demonstrate awareness of health-related rights

    Example: privacy, communication, etc.

    Strategies:

    • Ask for a copy of Patient’s Rights at the CMC Information Desk or from staff.
    • Review Patient’s Rights in the waiting room.
    •  Ask questions about what some of those rights mean for you

  • Consider whether to sign release of information to parent/guardian.

    Strategies:

    • Ask what information can be released to your parents before and after age 18.
    •  Ask someone in clinic for a copy of the Release of Information to review.

  • Be able to independently obtain refills.

    Strategies: 

    • Watch as an adult fills a prescription by phone or in person. Then fill a prescription while that adult watches you. 
    • Know what your medications look like, so you know if the pharmacy gives you something different.

  • Be able to identify members of health team/how to contact them.

    Strategies:

    • Name your primary care provider, neurology provider, and nurse.
    • Add the on call neurology provider and primary care provider’s number to your phone or in your wallet.

  • Verbalize when/how to call health care provider

    Strategies:

    • Ask your parents/guardians when they have called your doctor/nurse in the past. 
    • Review when to call with your provider/nurse.  Write these down if they are hard to remember

  • Be able to make own appointments.

    Strategies:

    • Learn the phone number to call to schedule appointments in regular clinics. 
    • Learn the phone number to call if you do not know who to call 214-456-2768, and what to ask when you call.

  • Verbalize when/how to access urgent care

    Strategies:

    • Know how to get to the ER, and which one to go to in an emergency. 
    • Develop a plan of how you would get to the ER (e.g. 911, call parent, identify a friend/neighbor). 
    • Ask your provider or nurse how to determine when urgent care is needed. Make a list.

  • Be able to set up transportation to appointments.

    Strategies:

    • If you use Medicaid transportation, ask your parent/guardian to show you how they do it. Then practice as they watch. 
    • Ask your social worker about transportation options. 
    • Develop a plan and backup plan for how to get to appointments.
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