Posted by pediatric nurse practitioner Lynn Cole, associate director of clinical services at the University of Rochester’s Division of Neurodevelopmental and Behavioral Pediatrics, one of 17 Autism Speaks Autism Treatment Network (ATN) sites across North America.
As a nurse practitioner and autism specialist, I often see families who ask about medicine. Today was no exception. The third family on my schedule was that of a delightfully engaging 7 year old who loves Thomas the Tank Engine and airplanes. While he has made substantial progress in many areas—language, changes in routine, self-help skills—he continues to struggle with attention problems and anxiety. His family described the many behavioral and educational interventions in place to help him. They worried that these difficulties would limit his learning and success. They wondered what I thought about medication.
The decision to use medicine to treat challenging behaviors is a difficult one. Some childhood disorders have an obvious treatment–diabetes is treated with insulin, for example. Best treatment for a child with autism is not so clear cut. Hearing parents talk about their stress around these decisions, I began thinking about new ways to partner with families in the decision-making process.
It was on this quest that I learned about Shared Decision Making. In a nutshell, this describes a process for making a decision when there is not one clear “best choice.” Patients, families and health care providers work together to make a decision while considering risks and benefits in the context of patient and family values and preferences.
Sharing in these decisions, however, is easier said than done! Families often need help conveying the nature of the role they want to play. Often, they also need help taking stock of their personal values and preferences as they relate to medications. Providers, in turn, need to convey risk and benefit information in ways that makes sense to families.
“Should My Child Take Medicine for Challenging Behavior?—is an interactive toolkit with questions and worksheets that help families work with their health care providers to make decisions that reflect the family’s goals and values for their child.
From first-hand experience, we know that this decision aid can help families move through the decision-making process before, during or after meeting with a healthcare professional. The family with whom I met this morning, for example, had used the toolkit before their appointment and brought a printout of their worksheets. When I asked them how they saw their role in the decision, they told me that they would like information and options, but that they would make the final decision. They were able to express their values, including that they were generally a “no medicine family,” that they generally preferred natural treatments and that side effects were a big concern for them.
They had put thought into both the risks of treatment and the risks of not treating their son’s symptoms. For instance, they saw a significant risk of his missing out on educational and social opportunities because of his symptoms. Given their concern about side effects, we focused on an option with relatively few of them.
Together, we developed a treatment plan. They left with a prescription and a commitment to review the risks and benefits again that weekend—before making their decision. Although this remained a difficult issue, they spoke with satisfaction about the process we used.
Healthcare providers have likewise expressed great satisfaction with the ATN’s new medication decision aid. “I liked using it with my patients so much,” one colleague told me, “that I found a decision aid about treatment of my own health condition and used it to discuss options with my doctor!” We hope you, too, will find this new toolkit useful. You can download it here. Please let us know about your experience by emailing us at firstname.lastname@example.org.
The Autism Speaks ATN/AIR-P Medicine Decision Aid is the product of on-going activities of the Autism Speaks Autism Treatment Network, a funded program of Autism Speaks. It is supported by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Research Program to the Massachusetts General Hospital. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the MCHB, HRSA, HHS.