7 Lessons We Learned About Transitioning to Adult Healthcare

Earlier this year, my medically complex daughter with significant disabilities turned 18. This birthday was a sweet victory because we weren’t sure that she would ever reach her eighteenth birthday. The average life expectancy for kids with her syndrome is 6-8 years, and just before her birthday, she spent nearly a month in the ICU fighting for her life. We certainly had cause for celebration on her birthday.

But, turning 18 has meant some extra challenges as well. Now officially an adult, our children’s hospital requires that we transition our daughter to adult care. After spending 17 years building a medical team that knows our daughter and our entire family, we’ve been reluctant to restart that team-building process on the adult side. However, dragging our feet is not a long-term option, even in the midst of a pandemic. Over the last six months, we’ve had to get serious about this transition from pediatric to adult care. 

We’ve taken an organized, methodical approach to the transition process. Here are 7 lessons we’ve learned:

1 – Determine which health system you want to provide care for your adult child.  

In our area, there are 2-3 major health systems. We want an integrated approach to our daughter’s care, and we prefer to have all of her specialists in one of those systems rather than working with care providers in two or more different systems. Here are the criteria we considered when choosing one health system for all of our daughter’s care:

• If our daughter needs to be hospitalized as an adult, which hospital do we feel will best be able to meet her needs?
• Which health system is most closely connected to our children’s hospital?
• Which health system is in-network for our insurance?
• Which health system does the rest of our family use for health care?

2 – Understand whether you need to make a complete or a partial transition.

You will need to decide if all of your child’s care will transition to adult care providers or if some pediatric specialists will remain on your care team. Here are the considerations that impacted our decision to transition all of our daughter’s care to adult providers:

• At what age are patients required to transition to adult care?  Note that this can vary between different specialists and clinics.
• Are any of her pediatric specialists providing care or treating a condition that is unfamiliar to the adult providers? Would we be sacrificing care quality or specialized knowledge by transitioning certain specialties to an adult provider?
• How difficult will it be for the care team to communicate and collaborate if they are split between children’s system and the adult system?
• If our daughter needs to be hospitalized as an adult, how would her care be impacted by having specialists split between the children’s system and the adult system?
• Do any of her current providers in the children’s system also see adult patients? If so, can that provider help serve as a bridge between the pediatric and adult systems?

 3 – Choose a primary care doctor early in the transition process.

Knowing that the primary care doctor would serve as the team captain and point person on our daughter’s new adult care team, we chose this doctor as soon as we decided which health system we would be transitioning to.

When choosing a primary care doctor, these were priorities for us:

• Finding a Med Peds Doctor – Short for Combined Internal Medicine & Pediatrics, a Med Peds doctor is qualified to care for patients of all ages, from newborns to geriatrics. Because a Med Peds doctor has expertise with both the pediatric and adult approach to patient care, they can help make the transition process more seamless.
• Personality and ‘bedside manner’ – After working with countless doctors and other medical professionals over the years, we knew it was important to find a doctor who we could build a strong, positive relationship with. Characteristics that are important to our family include: straightforward, kind, trustworthy, and smart. While your list may be different, it’s important to think about the type of person who will be a good fit to lead your child’s medical team.
• Size of the practice, number of doctors on the team – We chose a doctor who practices in a group of nine Med Peds doctors. For us, this is the perfect size; it’s small enough for us to become familiar with all of the doctors in the practice and large enough for the team of doctors to be able to ensure that a doctor is on call and accessible during off hours and weekends.

4 – Map it out to avoid care gaps.

Because adult care is structured differently than pediatric care, it’s possible that the adult primary care doctor will manage parts of your adult child’s care that were managed by a specialist in the pediatric care model. It’s also possible that a different type of specialist will address specific issues in the adult system. For example, in the pediatric system, a nephrologist managed my daughter’s bone health. As an adult, a rheumatologist will manage her bone health.

To make sure we didn’t leave any gaps in care, we mapped each specialty from the pediatric team to the adult team. This roadmap, created in collaboration with the new primary care doctor, included an overview of why our daughter was seeing each specialist, how often we typically had follow-up appointments, and which medications each specialist prescribed. This simple, but effective tool helped ensure that all of my daughter’s transition to adult care was organized and complete, without any gaps or misunderstandings.

I have created a template that you can use to do this mapping. Click here to download a copy you can use.

5 – Get input from the entire team when choosing adult specialists.

Once we chose our daughter’s primary care doctor and she started to get to know our daughter, she was able to make recommendations for adult specialists who would be able to meet our daughter’s care needs. She was also able to suggest specialists that she felt comfortable working with, which is an important consideration.

We also asked each of her pediatric specialists for their input about adult specialists. This strategy worked extremely well for one of my daughter’s most important specialties – neurology. Our pediatric neurologist was able to schedule an appointment that the new adult neurologist attended. Having all of us in the same room together helped make the transfer of knowledge from the pediatric to adult specialist more thorough. It also got our relationship with the adult neurologist off to a great start.

6 – Leverage tele-health technology when it makes sense.

We began our transition to adult care at the beginning of the COVID-19 pandemic. In order to make progress with the transition, we needed to find a way to effectively use tele-health options. Our first appointment with our daughter’s adult primary care doctor was via the phone. At first, I considered cancelling the appointment since it seemed that it would be ineffective to have an initial appointment virtually.  However, we proceeded with the appointment and used the time to walk through the mapping template. The appointment turned out to be a highly productive time to build a strategy and share information, and it set the stage for a planned, organized transition.

7 – Be clear about expectations during the transition process.

Transition is not a single event; it’s a process. That means there will likely be a period of time where your child’s care is being managed partially by the adult team and partially by the pediatric team. During this time, it’s important to be clear about who is doing what. For example, I made sure I knew who to contact if we needed a prescription refilled or if we have a non-urgent question. It was also important to me that I was clear about which hospital – pediatric or adult – we would rely on if our daughter had an acute illness during this in-between stage of our transition.

For us, the transition process has been bittersweet. We have strong bonds with our daughter’s pediatric team, and they have supported us through complex, frightening, and difficult times.  We will miss them both personally and professionally. But, we also celebrate reaching this wonderful milestone in our daughter’s life. We’re also looking forward to fresh perspectives and new ideas that we hope will help us continue to improve our daughter’s health and wellbeing.