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Expanding the Capacity of Primary Care to Care for Children with Autism Spectrum Disorder.

TitleExpanding the Capacity of Primary Care to Care for Children with Autism Spectrum Disorder.
Publication TypeConference Abstract
Year of Publication2016
AuthorsVan Cleave, J, Holifield, C, Neumeyer, AM, Van, L, Powers, E, Kuhlthau, KA
Conference NamePAS.

Background: Children with autism spectrum disorder (ASD) often have ongoing physical and behavioral problems requiring management and monitoring. Many children with ASD have difficulty accessing specialty services for these conditions.

Objective: To qualitatively examine perspectives of specialists, primary care physicians (PCPs), primary care staff and parents on delivering specialty and primary care to children with autism spectrum disorders following diagnosis, with a focus on enhancing management of chronic physical and behavioral problems common among this patient population.

Design/Methods: Semi-structured interviews were conducted with 29 participants. Participants included X specialists and X primary care physicians with regular contact with children with autism; X primary care staff (e.g., nurses, front desk staff); and X parents of children with autism. Recruitment started with 5 specialty centers within the Autism Treatment Network (ATN), and primary care physicians (PCPs), staff, and parents were those familiar with referring to or receiving care from an ATN center and within primary care. An interview guide with similar domains but tailored to participant group was used. Domains focused on types of clinical problems encountered, process of referral and communication between primary care and specialty care, and patient/family experience with care in each setting. Interviews were transcribed and analyzed for themes, with comparisons among participant groups.

Results: Several themes arose from these interviews: Most participants endorsed that basing care for ongoing problems associated with ASD in primary care is appropriate for most patients, although PCPs varied in their ability and comfort to manage such problems. Few practices had policies, guidelines, or quality initiatives specific to ASD, but most made individual-level accommodations and had a defined process for implementing improvements generally. In developing more formal quality improvement and co-management strategies, establishing infrastructure, defining roles, financial support and strains on existing workflow were cited as areas to address.

Conclusions: Key groups of providers and caretakers for children with ASD perceive primary care as appropriate for ongoing care of ASD-related conditions. Access to specialty expertise, financial stability, and communication infrastructure are perceived as necessary for interventions to facilitate this.