Factors Affecting Caregiver Satisfaction with a Family-Centered Evaluation for Autism Spectrum Disorder (ASD)

Background:  Research consistently shows that the needs of children with ASD are complex and involve medical, educational, social, community, and family factors.  These complex needs often necessitate multidisciplinary care and coordination of services from a wide range of providers (Volkmar et al., 2014). Unfortunately, studies have identified difficulties when families of children with ASD attempt to access empirically-validated services in a coordinated way, thus reducing family satisfaction and delaying initiation of services (Liptak et al., 2006). Furthermore, although ASD can be diagnosed in children as young as 12 months, delays in accessing healthcare systems often prevent diagnosis until age four (CDC, 2014). This delay in diagnosis prevents the family from accessing early, intensive behavioral interventions which have been empirically validated to significantly improve the social, communication, cognitive, and adaptive functioning of children with ASD (Wong et al., 2014). Given wait-times for ASD evaluation that exceed one year, a single-visit evaluation clinic where children are evaluated within one month was developed in a hospital setting to rapidly assess a family’s needs  and expedite medical diagnosis and recommendations.

Objectives:  Minimal research has investigated caregiver satisfaction with a hospital-based, single-visit evaluation clinic for children with ASD.  Thus, the aims of the study were to: 1) assess if pre-existing diagnosis impacts caregiver satisfaction; 2) assess if type of recommendations offered during the evaluation impacts caregiver satisfaction; and 3) assess if child’s age impacts caregiver satisfaction.

Methods:  Following participation in the evaluation clinic, caregivers (n = 67) completed questionnaires that assessed satisfaction with the evaluation.  Caregivers were divided into groups based on pre-existing diagnosis (no diagnosis, ASD diagnosis, other mental health diagnosis) and child age (four and under, over four). Recommendations offered during the evaluation were obtained via chart review.  

Results:  Overall caregiver satisfaction with the evaluation was high (M =28.58 out of 35, SD = 7.5). Caregivers of children with no pre-existing diagnosis were more satisfied [F(2, 57) = 4.94, p = .011] and reported greater stress reduction as a result of the evaluation [F(2, 57) = 5.48, p = .007]as compared with those whose children had a pre-existing diagnosis (see Figure 1).  Caregivers of children four years and younger were significantly more satisfied than parents of older children [F(1, 59) = 7.85, p= .007] (See Figure 2). The recommendations provided (e.g., referred for further testing) did not impact caregiver satisfaction.   

Conclusions:  Preliminary data indicate that a rapid, one-visit evaluation meets family’s needs for diagnosis, particularly when they lack prior diagnostic clarity or if their child is under age four.   Additionally, the outcome of the appointment, such as whether further testing was recommended, did not impact satisfaction.  The preliminary results of this study offer a cost-effective model for diagnosis of ASD that meets family’s needs and supports access to empirically-validated interventions.