Access to specialty care in autism spectrum disorders-a pilot study of referral source

Abstract

BackgroundIn the United States, a medical home model has been shown to improve the outcomes for children with special health care needs. As part of this model, primary care physicians provide comprehensive medical care that includes identification of delayed and/or atypical development in children and coordination of care with specialists. However, it is not clear if families of children with Autism Spectrum Disorder (ASD) rely on the medical home model for care of their child to the same extent as families of children with other special health care needs. This study aims to add to the understanding of medical care for children with ASD by examining the referral source for specialty care.MethodsThis retrospective study was accomplished by evaluating parent completed intake data for children with ASD compared to those with other neurological disorders in a single physician Pediatric Neurology Practice at a major urban medical center in Northern New Jersey. To account for referral bias, a similar comparison study was conducted using a multispecialty ASD practice at the same medical center. Parent reported "source of referral" and "reason for the referral" of 189 ASD children and 108 non-ASD neurological disordered children were analyzed.ResultsThe specialty evaluations of ASD were predominantly parent initiated. There were significantly less referrals received from primary care physicians for children with ASD compared to children with other neurodevelopmental disorders. Requirement of an insurance referral was not associated with a primary care physician prompted specialty visit.We identified different patterns of referral to our specialty clinics for children with ASD vs. children with other neurolodevelopmental disorders.ConclusionThe majority of the families of children with ASD evaluated at our autism center did not indicate that a primary care physician initiated the specialty referral. This study suggests that families of children with ASD interface differently with the primary care provider than families of children with other neurological disorders.

Racial and Ethnic Differences in Subspecialty Service Use by Children With Autism

“…Ming et al 23 found that parents initiated the majority of ASD referrals to their neurology practice. Patients with ASD may therefore access subspecialty care without referral from other physicians.…”

“…It is important to note that although ASD is known to be associated with increased rates of co-occurring disorders, no specific standards of care exist for the evaluation and care of these comorbidities. [22][23][24][25][26] Despite the lack of guidelines, many children with ASD receive care from multiple providers including neurologists, psychiatrists, gastroenterologists, and speech pathologists. Multiple studies have revealed that when a testing or treatment modality is new, white patients have better access than minority patients.…”

Autism and Pediatric Practice: Toward a Medical Home

“…Families of children with ASD who are concerned that their primary care provider may have insufficient knowledge about comorbid conditions may bypass the primary care provider by seeking subspecialty consultation. This has been documented in referrals for neurology evaluation for children with ASD (Ming and Hashim 2011). In many insurance systems, referral for subspecialty evaluation must be recommended by the primary care provider.…”

Access to Services, Quality of Care, and Family Impact for Caregivers of Children with Autism Spectrum Disorders: A National Perspective Using 2009-2010 Children with Special Health Care Needs (CSHCN) Survey

“…found that caregivers of children with ASD report significantly greater issues with access to care as compared to children with mental retardation and other children with special health care needs. Ming et al (2011) found that lesser number of children with ASD received referrals for specialists from their primary care physicians as compared to children with other neurologic disorders. examined perceptions of parents of children with a DD including ASD about satisfaction with primary health care.…”

“…Such significant differences in health care needs and costs between children with ASD and other developmental disabilities/mental health conditions have been reported by many other researchers as well (Kogan et al, 2008a;Kohane et al, 2012;Wang & Leslie, 2010) The current study aims to examine the disparities related to access to care, quality of care, and impact of the condition on the family as reported by caregivers of children with ASD as compared to caregivers of children with other developmental disabilities (DD) and mental health conditions (MHC). Some studies have found that caregivers of children with ASD have greater problems with access to care Ming et al, 2011), are less satisfied with the quality of services provided (Liptak, Orlando, Yingling, Theurer-Kaufman et al, 2006b) and show greater unmet needs and burden (Cadman et al, 2012) as compared to caregivers of children with disabilities like mental retardation and ADHD.…”