Three Common Mistakes When Transitioning a Medically Complex Child to Adult Care

Laura Kane, RN, BSN, is the nursing supervisor at Gillette Children’s Specialty Healthcare in St. Paul, MN. She is currently in graduate school at the University of Minnesota, and as part of her doctoral program is working with Pediatric Home Service on developing evidence-based tools and processes to transition adolescents who have special health care needs from pediatric to adult providers. In May 2019, she will graduate as a Doctor of Nursing Practice in Health Innovation and Leadership

Today, Laura is sharing what she’s learned about the process of transitioning medically complex children into adult care, and the common mistakes she sees being made. Read on to learn what they are, and how you can avoid them. 


As advances are made in healthcare, children with medical complexities are seeing better outcomes and longer life expectancies for diagnoses that were previously limiting – a remarkable sign of the headway being made with the help of data and technology.

These children are receiving high-level medical care at home, where they can continue to be active in their school and community. They are celebrating birthdays into the double digits – and then becoming young adults. 20 years ago, there weren’t nearly as many children reaching age 18 so it wasn’t as necessary to have conversation around how that transition into adulthood will look and what factors need to be considered. But today, it’s a topic that has become overdue and increasingly urgent to keep our patient population well cared for and properly supported.

Undoubtedly, the most critical stakeholder in this process is the patient themselves. And because their family is often involved in major decisions, they play an active role in the conversations and helping to determine next steps in the transition – tasks that require a great deal of energy, coordination and resources.

There are a few common errors I see families making in the process, and it is my hope that by addressing them here, families can be more aware of what is often a major shift for the patient.

  1. Waiting to start the conversation

In a world where a child’s needs can change daily if not hourly, it can be difficult to consider what they will require 5 years down the road. But by starting to think as early as age 13 about what will help a child progress into adulthood, the process can happen in tiny increments over a long period of time rather than being sprung on the family unexpectedly.

The first step can be as simple as mentioning it to your child’s current doctors at you have scheduled. By asking a question like, “what is your clinic’s policy on transitioning patients to an adult provider?” or “at what age will you no longer be able to follow my child?”, you can begin to gain a better understanding of when changes will be happening and what to expect. Your doctor may have recommendations for navigating this process and will be a valuable resource as you get closer to identifying a new provider down the road.

  1. Only thinking about their healthcare transition

While medical needs are likely the highest priority when preparing for the changes that come as a medically complex child becomes an adult, there are other considerations when looking at the whole scope of a child.

To ensure you’re looking at the larger picture, consider their day-to-day activities and make a list of the different people or locations they’re involved with. From there, determine if they will need to adjust any aspects of these interactions as they shift in adulthood and begin conversations with the appropriate person or people. This could include:

  • consider factors beyond healthcare when transitioning into adulthoodConservatorship – will they require someone to manage their financial affairs or daily life?
  • Guardianship – do they need someone appointed to make legal decisions for them?
  • Living arrangements – will they live with you? Live on their own? In a group home?
  • Relationships – will they decide who they want to maintain friendships or relationships with? What will their social life look like?
  • Education – will the child be going to college? What logistics will be involved? Will they continue the education they’re currently in, or find another program?
  • Careers – will they get a job? Do they want a job? Will you try to find a transition program?
  • And more depending on the child’s ability to be independent or make informed decisions. This video series from Nemours Children’s Health System gives great insight into aspects of the child’s life to consider.
  1. Assuming all medical records are readily and easily accessible

Once you’re ready to begin transitioning your child’s care, complete medical records will offer in-depth knowledge of their history to their new physician, making the process smoother and the care safer. And while teaching healthcare professionals about your child can be a daunting aspect of transition to prepare for, having your child’s medical records in order will help them learn about your child’s needs and unique characteristics.

Health records are not always all in one location, especially if your child has providers through more than one system. By requesting records from the different clinics and hospitals your child has received care at in advance, you can ensure that the dates of various procedures are accounted for, and there isn’t a gap in his or her history.

Increasing Physician Preparedness

Beyond helping families take the right steps toward their child’s transition into adulthood, it’s equally important to ensure pediatric doctors are prepared to help their patients navigate this major change and adult doctors are equipped with the knowledge and tools to support this incoming population.

physician awareness of the transition process In my time working with Pediatric Home Service to develop resources and tools for the transition process (including readiness assessments, handoff checklists, and more), I have discovered what a key role providers play in helping to facilitate a smooth process for these families. As I’ve mentioned before, it’s something that needs to happen over years – not months, or suddenly when a patient comes into the hospital for an acute illness and discovers they can’t be seen there anymore. Communication with patients and families, offering suggestions or recommendations for adult providers, and helping facilitate that shift to a new physician can all play major roles in creating a smooth journey for the child. GotTransition.org offers helpful resources for physicians and families who are supporting adolescent patients.

Closing the Gap

Medically complex children have seen an improved quality and outlook of life thanks to advances in technology. Networks of family members, caregivers, healthcare professionals, and support teams have gotten these children further than anybody thought was possible just a couple decades ago – and it’s crucial to close the gap that currently exists in transition into adulthood.

Throughout the upcoming year, I plan to finalize tools that will help families feel prepared and empowered to successfully navigate an often-overwhelming process and they will be available on the Pediatric Home Service website. By looking ahead and eliminating these three common mistakes, an entire population of young adults can thrive and transition seamlessly.

 

Originally published: April 25, 2018

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