“The times I have asked about treatment, I am kind of met with a blank stare,” one parent reported of the experience of discussing therapy for their child’s autism spectrum disorder (ASD) with the pediatrician.
This parent’s experience is likely not unique, according to a recent qualitative study led by researchers at The Children’s Hospital of Philadelphia.
When a young child receives a diagnosis of ASD, his or her parents can find themselves facing a wide array of therapeutic choices and services from medical providers, educational settings, complementary and alternative sources, and friends and family, that all claim to help their child with some aspect of behavior, learning, or physical health. The number and variety of options can be dizzying. Especially for a condition that is as varied and individual in its presentation as ASD, the best choices for each child can be unclear.
The new study, led by Susan E. Levy, MD, MPH, a developmental and behavioral pediatrician in the Center for Autism Research and the Division of Developmental and Behavioral Pediatrics at CHOP, suggests that pediatricians and families may miss opportunities to work together to sort through those choices and find each family the most appropriate treatments and supports, through a process called shared decision-making (SDM). Based on these findings, the researchers encourage pediatricians and parents to do more to seek out available resources about ASD and treatments and be open to discussing them as a team.
A major roadblock to weighing and making treatment decisions together, according to parents and pediatricians interviewed in the study, is that the conversations that could involve SDM only rarely occur. Many parents reported that they did not discuss the choice of any treatment options with their pediatricians.
“We really don’t involve the pediatrician,” one parent said. “Those kinds of decisions are made between our family and the actual hands-on therapists that [our child] has now.”
The study involved in-person or telephone interviews of 20 pediatricians and 20 parents of young children with a diagnosis of ASD, ages 2 to 5 years. All participating clinicians were from the CHOP pediatric network, equally drawn from urban and suburban settings. The findings were published online in Academic Pediatrics.
Dr. Levy’s initial goal in conducting these surveys was to gain insight into what factors are successful in supporting SDM. However, the overall lack of communication about ASD treatment choices meant too little SDM occurred in this group to determine what factors support it. SDM has been studied over recent decades as a method for improving provider-patient communication and partnership, with improvements seen in satisfaction, adherence, and health outcomes.
Still, the major themes that emerged from the interviews point to important gaps that could become opportunities to improve care. In addition to the lack of treatment discussions, another major thematic finding was that both parents and physicians reported knowledge gaps about ASD treatments and community resources, and they described ambiguity about the pediatrician’s role in ASD care.
“I was a little surprised that pediatricians didn’t feel they had the knowledge, and also that they didn’t feel it was within their scope of practice to be advising families about treatments, other than to provide referrals to outside specialists or services,” said Dr. Levy, who is also a professor of Pediatrics at the Perelman School of Medicine and a member of the Center for Public Health Initiatives at the University of Pennsylvania.
In addition, the research team found that the use of complementary and alternative medicine (CAM) treatments created conflict between pediatricians and parents — a finding supported by prior research by Dr. Levy and others. According to national and international surveys, less than 50 percent of pediatricians and family practice doctors routinely ask about CAM use.
“If providers do not ask, they cannot discuss it,” Dr. Levy and colleagues wrote. They emphasized that pediatricians are in need of better resources and strategies to help them engage in productive discussions with parents about CAM treatments, including talking about potential dangers of some CAM treatments and about shared goals and parents’ views and values.
More broadly, based on their findings, the researchers suggest that as primary care pediatricians encounter more children with ASD in their practice, they may benefit from the use of tools available through the American Academy of Pediatrics (AAP), such as the Autism Toolkit and clinical practice guidelines. Such tools have helped support pediatricians in managing children with attention deficit hyperactivity disorder (ADHD) in primary care.
However, significant differences, such as more medication options that may be effective in treating core symptoms of ADHD than are available for ASD, could make the learning curve steeper for pediatricians getting familiar with ASD treatments, noted study co-author Alexander Fiks, MD, MSCE. Dr. Fiks, a pediatrician at CHOP’s PolicyLab and the Center for Pediatric Clinical Effectiveness and associate professor of Pediatrics at Penn, has investigated how to implement SDM approaches for children with special healthcare needs, including ADHD.
Additional resources the study team recommend include the CAR Autism Roadmap developed at CHOP for families and providers anywhere, resources linked from the CHOP autism pathway for screening and referral, and decision aid tools that physicians might use to frame conversations about treatment choices. Many of these resources were not yet available at the time the researchers surveyed pediatricians.
In addition, Dr. Levy said, a forthcoming clinical report from the AAP at the end of this year will offer pediatricians strategies on the use of SDM. Dr. Levy, a member of the AAP’s Council on Children with Disabilities and Autism Subcommittee, is a contributor to that report.
Reaching decisions together may not ever be easy, but Dr. Levy encourages both families and physicians to begin by trying to have the conversation.
“The hope is that we can get both sides open to having a discussion in the format that occurs in shared decision-making,” she said. “That’s not pushing one way or another, but an open discussion about different treatments that are out there and available, sharing thoughts, knowledge, and questions, and figuring out together how to reach the right solutions.”