Stages to Transition

As a teen patient, you should learn as much as you can about your condition and your healthcare needs. You should do as much as you can to manage your healthcare needs on your own and actively participate in your medical care. The doctors and nurses who provide your care will partner with you in this process.

Read on for an overview of the transition process, or jump ahead to age-specific checklists.

Key areas you should be able to successfully manage prior to transition

You Should Know:

  • Your medical condition(s)
  • Your medications including names, purpose, dosage, potential side effects and interactions
  • How to manage and prepare your own medications
  • Your tests and what the results mean for your ongoing care

Develop Independence and Assertiveness

  • Take personal responsibility for knowing your medication schedule and adhering to it
  • Take responsibility for making your own appointments with the healthcare provider
  • Self report your history to the healthcare provider rather than relying on parents or caregivers. You can use the forms on this page to gather your medical history
  • Plan for the future (school, work, etc.)

Health and Lifestyle

  • Know the effects of drugs, alcohol and smoking
  • Know the consequences of not following your medication regimen
  • Know the concepts of a proper diet and exercise regimen
  • Understand the impact of your healthcare on sexual function and fertility

Are You Ready to Transition?

  • Do you take responsibility for your own care most of the time?
  • When you give the team your health history, does it sound the same as what   
    your parents tell the team?
  • Do you take your medications without your parents reminding you?
  • Can you tell the team when you are not feeling well or if you have any concerns?
  • Do you speak directly with your medical team?
  • Do you know when you need refills for your medication? Do you call the pharmacy?
  • Do you have a plan for your future, such as college or work?
  • Have you met the goals in each checklist?

Age-Specific Checklists

If you were diagnosed as a teenager, start at the beginning of the transition stages and work your way up to your current age group.

You can print individual checklists for each age group, or print the full checklist that shows all the milestones for the entire transition process (PDF).

Find your age group:

Ages 12–14 (Early Adolescence)

  I can describe my health condition

  I can name my medications, the amount and times that I take them

  I can describe the common side effects of my medications

  I know my doctors’ and coordinators’ names and roles

  I can use and read a thermometer

  I can answer at least one question during my healthcare visit

  I can call my doctor’s office to make or change an appointment

  I can describe how my health condition affects me on a daily basis

Print this checklist (PDF)

Ages 15 – 16 (Mid Adolescence)

  I speak up in my doctor visits: I ask questions and am involved in making decisions about my healthcare

  I know the names and purposes of the tests that are done

  I know my medical/surgical history

Print this checklist (PDF)

Age 17 (Late Adolescence)

  I understand that I must check with my doctors before I take any medications, prescribed or over-the-counter, as they might interact with the medication(s) that I am taking for PH

  I am alone with the healthcare provider or choose who is with me during a healthcare visit

  I can tell someone my legal rights and responsibilities that I gain when I turn 18

  I manage all my medical tasks outside the home (school, work)

  I know how to get more information about my health

  I can book my own appointments, refill prescriptions, and contact my medical team

  I can tell someone how long I can be covered under my parents’ health insurance plan and what I need to do to maintain coverage for the next two years

  I carry my insurance information (card) with me in my wallet/purse/backpack

  I continue to list medications and doses (bring your own medication list to clinic)

  I have a good understanding of issues surrounding sexuality and reproductive issues.

  If you are staying at home after high school, begin looking into local adult PH care teams you may want to work with. If planning to go to college or move away from home, look into PH care teams near the schools your are considering. Use our Find a Doctor Directory or ask for a recommendation from your current PH team. 

Print this checklist (PDF)

Ages 18 – 21 (Young Adult)

  Independent clinic visits

  Independent with medications

  Continue to make healthy and common-sense choices about friends, drinking, and smoking

  Independently monitor medications and supplies

  Call pharmacy when refills are needed

  Secured financial coverage or insurance 

Print this checklist (PDF)

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.