Adult Medical Care

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During the course of your child’s life, you and they may have developed close relationships with pediatric clinicians who know your family and whom you trust. Now, as your child matures out of pediatrics, you will likely need to identify clinicians who care for adolescents and adults. Building a new team and transitioning your child’s care will likely feel like a daunting process. It will take some time and planning. If your clinicians don’t immediately raise this topic, you may wish to ask and to request their ideas and support.

Your Team:

Primary Physician

A medical professional who practices general medicine.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Your child’s team, including their primary physician and specialists, can connect you to their adult medicine counterparts to initiate and guide the transition of care. A social worker or palliative care clinician is also a good resource for guidance.

Parenting is a lifelong process. New challenges emerge as your child matures, growing older and physically bigger. There will likely be fewer integrative therapies (music, massage, play) and limited community resources and psychosocial support in adult care compared to pediatric care. Pediatric clinicians may raise concerns about their ability to continue caring for your child. You may have your own questions about whether pediatric care will still meet your child’s needs.

There are positive aspects to transitioning to adult health care:

Age-appropriate Interventions. There are medical and logistical risks of having an adult patient stay in a pediatric setting. For example, there can be adult-onset health and hygiene issues that may not be recognized or addressed by a pediatric clinician.
New Perspectives. Establishing a relationship with new clinicians can offer a different perspective on your child’s condition and therapeutic options.
Treatment Options. There are treatment options for adults that are not offered in pediatrics, and clinicians who treat adults are experts in adult health and relevant treatments and interventions.

“It takes a really long time to find that core group of doctors that you can trust. So as you hit the point of aging out of them, you start holding on for dear life because you don’t know what’s coming next.“

– Natalie, parent of Emma

Planning for Transition

You will likely experience both logistical and emotional challenges as your child ages out of the pediatric health system. Take time and have conversations with your child’s care team, and with new potential clinicians, to decide what is in your child’s and family’s best interest. Be prepared to discuss what you value in caregiving and any hopes and concerns you have not just for your child but for your whole family.

Most experts recommend starting discussions with your child’s primary team when your child is between 14 and 16 years old. Some of the issues to explore with your child’s current clinicians as you are making the transition are:

Is there an upper age limit for your child to be cared for by the pediatric medical practice?
Is the clinician willing to continue treating your child beyond the normal age limit? Is that a good idea?
What assistance does the office provide for the transition? Will your clinicians recommend others, stay involved, answer questions or confer with the new clinicians?
Does your pediatric hospital or clinic continue to provide visits for adult patients? Do the policies vary from specialty to specialty?
Which adult providers have the expertise in the multiple conditions, or comorbidities, your child experiences, but not necessarily the expertise in the underlying disease?
Will the new clinician help you keep your adult/child front and center for research opportunities and/or new treatments that might become available?
(If your adult-child is fully dependent): Are medical transition resources, like a transition to adulthood program, available to us? Note: The CPN guide “Planning Transition from Pediatric to Adult Providers for the Fully-Dependent Child” is a helpful resource for better understanding and preparing for this transition.

Making the Transition

You will want to be prepared for these transitions to occur as smoothly as possible. Ask your child’s pediatrician to prepare a portable health summary and emergency care plan that can be shared with new clinicians. It will take time to establish mutual trust and understanding with the new clinicians. You may experience grief at the loss of services, a great deal of frustration, and even anger. This is understandable and normal. In time, though, you may also begin to understand some of the benefits of transition to adult clinicians.