Researchers have identified four barriers that make it difficult for families and pediatricians to share in treatment decisions for children with autism. Susan Levy, M.D., presented her team’s findings today at the International Meeting for Autism Research (IMFAR) in Toronto. Importantly, these barriers represent opportunities for improved shared decision making, the researchers note.
Shared decision making requires physicians and family members to share information and agree on a treatment plan. It is an especially useful process for autism because treatment can involve diverse options with risks and benefits that families value differently.
Levy and her team did their research at the Children’s Hospital of Philadelphia, one of 17 sites in Autism Speaks Autism Treatment Network (ATN). The researchers interviewed 20 primary-care pediatricians at Children’s Hospital of Philadelphia. In addition, they interviewed 20 parents of 3- to 5-year-olds diagnosed with autism spectrum disorder (ASD). They recorded, transcribed and analyzed the conversations with software that helped them identify common themes.
Four barriers/opportunities for shared decision making emerged:
Many parents didn’t ask or expect their child’s primary care pediatrician to help with autism-related treatment decisions. Conversely, the pediatricians said they felt inadequately trained to advise families about specific ASD treatments. However the doctors were comfortable making referrals for early intervention services.
When parents raised treatment choices, this tended to be an area of conflict with the pediatrician. This was especially true when parents discussed complementary and alternative medical treatments. Many physicians said they weren’t comfortable discussing the pros and cons of these treatments.
Both parents and doctors recognized similar barriers to accessing autism services. These included delays in obtaining evaluations, lack of treatment providers and high cost.
- Families expressed great stress as caregivers. But many did not see their pediatricians as knowing how to support them. Instead, they found support in their communities.
The researchers conclude that these four areas of need must be addressed to foster effective shared decision making in autism treatment. Physicians need more autism-specific training. This includes a better understanding of the risks and benefits of the alternative treatments. Parents need guidance on how to work with pediatricians to access resources and decrease family stress.
“This study supports what previous studies and parents have told us,” comments Autism Speaks Chief Science Officer Geri Dawson, Ph.D. “Many pediatricians are not prepared to provide the kind of guidance and discussion that parents need after receiving a diagnosis of autism for their child.”
This lack of guidance and engagement adds to the already high levels of stress that families reported during this study, Dawson adds. “Given the number of children affected by autism, it is crucial that primary care providers become reliable resources for discussing treatment options, while providing expert guidance and referrals."
Autism Speaks Autism Treatment Network (ATN) is dedicated to advancing family-centered, comprehensive care and treatment of children and adolescents with ASD. Its centers emphasize communication between healthcare providers and family members. Helping parents work with clinicians is also a major theme in the ATN’s tool kits for parents, including the Medication Decision Aid.
For more news and commentary, please see our 2012 IMFAR page.
ATN tool kits are a product of on-going activities of the ATN and are supported in part by cooperative agreement UA3 MC 11054 through the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA) Maternal and Child Health Research Program to Massachusetts General Hospital. Through this funding the ATN sites engage in activities as the Autism Intervention Research Network on Physical Health (AIR-P).