264536 Shared Decision Making (SDM) and the Treatment of Autism Spectrum Disorders (ASDs)

Monday, October 29, 2012 : 12:53 PM - 1:11 PM

Susan E. Levy, MD , Masters of Public Health, Pereleman School of Medicine at the University of Pennsylvania, Philadelphia, PA
Rosemary Frasso, PhD, MSc, CPH , Center for Public Health Initiatives, University of Pennsylvania School of Medicine, Philadelphia, PA
Stephanie Colantonio, BA , Center for Autism Research, The Children's Hospital of Philadelphia, Philadelphia, PA
Hayley Reed, BA , Center for Autism Research, The Children's Hospital of Philadelphia, Philadelphia
Gail Stein, MSW , Center for Autism Research, The Children's Hospital of Philadelphia, Philadelphia, PA
David S. Mandell, ScD , Center for Mental Health Policy and Services Research, University of Pennsylvania School of Medicine, Philadelphia, PA
Alexander Fiks, MD, MSCE , The Children's Hospital of Philadelphia, Philadelphia, PA
Background: Many pediatricians report discomfort managing children with ASDs. This may increase when families pursue complementary and alternative medical (CAM) treatments. Shared decision making (SDM) affords family members an opportunity to partner with pediatricians to exchange information and reach a consensus on treatment, taking into account evidence-based medicine and the context of family values. Purpose: To identify barriers to using an SDM approach among pediatricians and families of children with ASD. Methods: We conducted semi-structured interviews of 20 primary care pediatricians and 20 parents of children with ASD 3-5 years. Interviews were audiotaped, transcribed verbatim and analyzed using a modified grounded theory approach to identify common and differing themes. Results: We identified 4 themes: (1) Often parents did not discuss treatment choices with pediatricians who, nearly uniformly, were uncomfortable making recommendations. (2) Parents using CAM reported conflict with their pediatrician, who frequently disagreed with these treatments (3) Both groups identified similar barriers to services (diagnostic delay and expensive treatments), increasing family expectations for recommendations to overcome barriers (4) Families experienced great stress and found support in the community, but not from their pediatricians. Conclusions: Many pediatricians do not view ASD treatment to be within their scope of practice or competence. Pediatricians need additional training to be effective partners in SDM for ASD. Similarly, parents often independently pursue treatments, not benefiting from professional expertise regarding safety and efficacy of treatments nor referral to supports. Much work is needed to effectively foster SDM in primary care for children with ASDs.

Learning Areas:
Assessment of individual and community needs for health education
Other professions or practice related to public health
Planning of health education strategies, interventions, and programs

Learning Objectives:
1. Discuss factors associated with enhanced use of Shared Decision Making (SDM) in primary care and improved health outcome and satisfaction for families of children with autism spectrum disorders (ASDs)

Keywords: Children With Special Needs, Decision-Making

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am the principal or co-principal investigator of several federally funded grants focusing on the epidemiology and etiology autism spectrum disorders (ASDs). My scientific interests and activities include early identification of ASDs, management of ASDs (especially review of CAM treatments) and advocacy and education of pediatricians through membership in the executive committee of the Council of Children with Disabilities of the AAP. I am a Masters of Public Health student, to graduate 12/2012.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.