For any family, it can be intimidating to launch a child into young adulthood. Learning to manage the healthcare system is part of that launch—and it’s even tougher for young people with complex medical needs, such as Gaucher disease. However, families can plan ahead to teach kids the skills they need to manage their health.
We turned to Laurie Bailey for guidance on mapping out your child’s transition to adult healthcare. Laurie is a genetic counselor and the Clinical Research Manager at Cincinnati Children’s Hospital. She specializes in treating people with Gaucher disease and other rare genetic diseases.
3 Key Differences Between Pediatric and Adult Care
The transition to adult care involves more than just changing doctor’s offices. Seeing a pediatric specialist is quite different from visiting an adult doctor—and goes beyond your child’s age or size.
You’ll notice changes in:
- Where you get care: Your child probably receives nearly all their healthcare from a pediatrician. Except for certain needs like a Gaucher specialist, the pediatrician may be the only doctor your child sees. Adult care is different. Adults might see a primary care provider, orthopedist, gynecologist or urologist, allergist and other specialists for specific issues. Young people may need education about what a primary care provider is, what to see them for, and when to get a referral.
- Who controls care: You schedule, pay for, and often attend your child’s appointments. Once they enter the adult healthcare system, they must schedule appointments, follow up, and keep track of treatment plans on their own.
- Case management and social work support: For children with complex medical needs, the pediatric practice may provide case management support. A nurse or other clinician can make sure your child receives specialist care, physical or occupational therapy, or other services. In the adult health system, you must independently keep track of what you need and take action to receive those services.
What Is the Transition to Adult Care?
Laurie defines a successful transition of care from pediatrics to adulthood as teaching young people the skills they need to manage their health independently. The transition itself is the process of moving from pediatrics to adult healthcare. This transition can be an exciting challenge for parents and their children, Laurie believes.
As your child makes this transition, their pediatric provider or chronic disease specialist can:
- Help them find appropriate adult providers
- Discuss specific health challenges, such as Gaucher disease, with those providers
- Send past medical records to the new healthcare team, so they are up to date on your child’s health
Making a Transition Plan
Ideally, a transition plan is a written agreement between your healthcare provider, family, and young adult. Some health organizations have a written agreement, but most don’t. You can create your own plan, with input from your child and their providers, that covers:
- Stages of the transition: Laurie defines these stages as early (ages 13 to 14), middle (ages 15 to 17), and late transition (ages 18 and up).
- Goals and end date: The transition often completes between ages 18 and 24, depending on the child, their providers, and their needs.
- Parent and child responsibilities: Parents and young adults each have specific roles during each transition stage. In later stages, your child can take on more.
- Privacy and consent issues: Health privacy changes at age 18, when parents no longer automatically have legal access to their children’s medical records
One example of how a pediatric practice can engage in the early transition is to have young teenage patients attend part of an appointment without parents present. These visits give adolescents confidence in making some of their own health decisions in a supportive setting.
Tracking and Monitoring Your Transition Plan Goals
Once you’ve created the plan, it’s essential to use it. Assessing your child’s growing healthcare skills can tell you both when they are comfortable with responsibilities. It also lets you know when they are ready for more.
Laurie suggests evaluating your child’s skills together every six months or so, beginning at age 14. The specific assessment will vary by individual. An assessment might cover:
- Medical needs: Knowing their own needs and explaining them to others, and recognizing when a symptom is a problem
- Medications: Understanding what they take and what it’s for, any allergies to drugs, and how to refill a prescription
- Medical appointments: Being able to make an appointment, arrive early, ask questions, and fill out forms
- Specialized care: Being aware of where to get X-rays, blood work or urgent care when the doctor’s office is closed
- Logistics: Carrying ID and medical paperwork, knowing where their medical file is, and having transportation to appointments
You and your child will want to talk about their concerns about transitioning to independent care, too. Make a note of these concerns and agree on steps to manage them. At the next assessment, you can see what progress they have made.
Sample Adult Healthcare Transition Plan
Laurie shared an example of what the transition timeline and goals might look like. Suggested goals include:
- Age 14: Know the basics of your health, including allergies and specific conditions like Gaucher disease or attention deficit hyperactivity disorder (ADHD)
- Age 16: Understand prescribed medications, including dosages, and be able to talk with their health team, teachers, and family about the conditions and their treatments
- Age 18: Make and coordinate transportation to appointments independently and, asa legal adult with the right to make their own health decisions, understand their care, insurance, and ability to consent (or not) to joining research efforts
- Age 21: Have completed the transition to adult providers
- Age 24: Be able to manage billing and insurance
Creating a Transition File
By the time your child is nearly grown, you probably can’t remember a time when you weren’t an expert in their chronic condition. But because some of these diseases are rare, not all medical providers have medical expertise to match your family’s learned experience.
To inform new providers, you and your young adult child can create a digital transition file (such as a flash or thumb drive) to share with providers. If possible, families with Gaucher disease should work with a Gaucher specialist to develop these resources.
The file should include:
- Condition fact sheet: Share a summary of the condition, such as Gaucher disease, and its treatments. You might include resources, such as a link to gaucherdisease.org.
- Medical history: Summarize your child’s medical record, including surgeries and significant illnesses.
- Response to therapy: Include notes about which treatments your child has tried and their response.
- Healthcare team roster: List members of your child’s healthcare team and their roles.
- Examples of questions: Note some of the questions your young adult may ask so that the new provider can prepare.
- Monitoring plan: Describe tests your child has (such as blood work, MRI, and DEXA bone density scans), how often they typically have them, and why and where they have them.
When your adult child is ready to manage their care, congratulations are in order! At this point, your child “graduates” from the transition plan. They can take the assessment you compiled at the beginning and be confident that they can handle anything that comes up.
Young Adults Don’t Have to Transition on Their Own
At age 18, your child has the legal authority to make their own health decisions. But that doesn’t mean they have to make every decision by themselves.
For many teens and young adults, the best approach is to gradually learn to handle health-related issues. At first, they might listen in as parents schedule appointments or discuss an issue with an insurer. Next, they become the primary voice on those calls, with parents nearby to assist if needed. Eventually, they can handle these matters independently.
Young adults face important health decisions. For some with Gaucher disease, turning 18 means they are eligible to transition from ERT infusions to substrate reduction therapy (SRT) as a daily pill. But one approach may be preferable for your child’s needs and lifestyle.
The young adult, family, and healthcare team should make these choices together. As a team, you can also set parameters to judge whether a new treatment or approach is working. In the end, your adult child’s health is their decision—and when you’ve prepared, you’ll both be comfortable when they take the reins.
You can find support in developing and implementing a transition plan with resources including:
- Parenting Adolescents With Gaucher Disease: Webinar featuring Laurie Bailey addressing transitions of care
- Transitions: Managing Your Own Healthcare—What Every Teen with an LSD Needs to Know: Book specifically addressing challenges teens with Gaucher disease face
- www.GotTransition.org: Resource with quizzes and tools families and providers can use
- Transition to Adult Health Care: A Training Guide in Three Parts [PDF]: Guide offering more information for families with children with developmental or cognitive disabilities
How the National Gaucher Foundation Can Help
Throughout your lifetime of living with Gaucher disease, the National Gaucher Foundation is here for you. We offer resources to optimize your health with Gaucher disease and are available to connect you with the support you need