Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs)

Background: While many pediatricians are comfortable managing children with disorders such as ADHD that is not necessarily the case with ASDs.  Discomfort may be increased when families pursue novel or complementary and alternative medical (CAM) treatments. Shared decision making (SDM) is a process that includes participation by both physicians and family members, who share information, reach a consensus and then agree on a treatment to implement.  SDM is especially useful when there are multiple treatment options with distinct risks and benefits that families value differently, as is found with many treatments offered for ASDs.

Objectives: The purpose of this qualitative study is to examine factors influencing shared treatment decisions by primary care pediatricians (PCP) and families of children with an ASD, and to compare treatment related preferences, goals, and needs. Identifying these factors will help clinicians and families collaborate more effectively to implement an evidence-based treatment plan.

Methods: We conducted semi-structured interviews with 20 primary care pediatricians at Children’s Hospital of Philadelphia (64% female, 93% Caucasian, 7% Asian) and 20 parents of children 3-5 years of age (13% Asian, 20% African American, 67% Caucasian) with a reported ASD diagnosis.  Interviews were audio taped, transcribed verbatim and analyzed with NVivo9© software.  The research team employed a modified grounded theory approach and identified common and differing themes. 

Results: We identified four primary themes. (1) Role of the PCP: many parents did not expect their pediatrician to make ASD-specific treatment recommendations, in fact they often did not think of speaking to them about treatment options. Pediatricians were comfortable making referrals to early intervention, but reported inadequate training to advise families about specific ASD treatments or referrals.  (2) Treatment choice: this was an area of conflict for parents and clinicians, especially when parents discussed CAM treatments.  When parents did discuss CAM treatment, they reported difficulty engaging their PCP in a discussion.  Most PCPs did not feel trained or competent to discuss the merits or problems of CAM treatments.   (3) Barriers to care: both parents and clinicians recognized similar barriers to ASD treatment receipt (delays in obtaining evaluations, costly treatments, and a lack of treatment providers).  While parents did not view pediatricians as a primary source of treatment advice, they did view them as a potential resource to coordinate care and overcome these barriers.  (4) Caregiver stress: families experienced great stress.  They often found support in the community and many did not perceive that their pediatricians knew how to support them.   

Conclusions:   Our study identified multiple areas to be addressed for SDM to be possible for the treatment of ASD in primary care.  Many pediatricians do not view ASD treatment as within their scope of practice, and, even clinicians interested in managing ASD, lack training.  Families need to be guided regarding what to realistically expect from their PCP and how to work with them to decrease stress and access appropriate resources.