AAP Voices Blog

I am the medical consultant for the Michigan Pediatric Epilepsy Project, which is part of the Transforming Health Care for Children and Youth with Epilepsy project of the National Coordinating Center for Epilepsy.

There are four major areas of focus: health care transition, telehealth, collaboration and co-management, and shared decision making. The last one is a particular favorite of mine, and during National Epilepsy Awareness Month, it’s an especially good time to talk about it.

When I first heard the phrase “shared decision making,” I thought it would be very easy to meet project goals because pediatricians already do this. We are family-centered, we listen to our patients and their caregivers, and we provide information. As pediatricians, we are good at listening and good at educating. However, as I learned more about shared decision making, I realized that there is much more to it than these typical practices.

Shared decision making is an approach to care when there is more than one reasonable course of action. The professional brings expertise and unbiased information about treatments and the patient/family brings knowledge of their personal circumstances and value-related priorities. Together, they choose the best course of action. It is critical that the patient/family has access to accurate and unbiased information about treatment options and the evidence supporting those options.

Patient Decision Aids, such as handouts or brochures, are often used to prepare the patient/family for the conversation. Patient Decision Aids have been developed for some conditions; unfortunately, most of the decision aids available on the internet and in the literature are for adult diagnoses, such as prostate and breast cancer and joint replacement surgery. There are not many available for pediatric conditions. Pediatric providers may need to develop their own specific for their field.

To fill the gap in epilepsy care, the Patient Family Advisors of the Michigan Pediatric Epilepsy Project have developed a tool to help patients/families set the stage for partnership when they meet with the provider team. The MEET ME tool lays the groundwork for family-professional partnership; it does not provide information for a specific decision point.

What are some of the decision points in epilepsy care that are appropriate for shared decision making?

As a general pediatrician, I realize that most treatment decisions about epilepsy are made in the neurologist’s office. Neurologists and epilepsy experts working on our project provided examples in their work including surgical intervention when epilepsy is resistant to medical management, discontinuing medication after a period of no seizures, or adopting a ketogenic diet. All of these would be appropriate for shared decision making if there is more than one reasonable and medically sound treatment path.

Other key decisions may be addressed by primary care team and the patient/family. An example offered by one of our Michigan practices is the transition to an adult model of care: when and to whom to make the transfer from pediatrics to an adult provider.

Some decision points might best be addressed with either the subspecialist or primary care. Consider a 16-year-old who has been seizure-free for some time; the decision to continue or discontinue medication will include consideration of their hopes to get a driver’s license so they can help with family errands and join their friends. Whomever engages in the discussion needs to have access to the risks and benefits of discontinuing medication and to understand the youth’s preferences and values.

My colleagues in neurology mentioned some topics that are not appropriate for shared decision making, including deciding whether to get the COVID-19 vaccine for a 13-year-old with epilepsy or the use of contraception by a 16-year-old girl who is sexually active with men. These are topics for which patient education and motivational interviewing are more appropriate.

“As we mark National Epilepsy Awareness Month, let’s work to enhance family-professional partnerships and help our patients choose the treatment plan that is truly the best for them and their family.”

How do we operationalize shared decision making in our practices? The Agency for Healthcare Research and Quality has developed the SHARE Approach to make it easy for providers to remember and follow:

Step 1: Seek your patient’s participation.

Step 2: Help your patient explore and compare treatment options.

Step 3: Assess your patient’s values and preferences.

Step 4: Reach a decision with your patient.

Step 5: Evaluate your patient’s decision.

As we mark National Epilepsy Awareness Month, let’s work to enhance family-professional partnerships and help our patients choose the treatment plan that is truly the best for them and their family.