Objectives: To determine the quality of family-centered care provided at a tertiary care center that offers health and behavioral services for individuals with autism and other developmental disorders (DDs). This study is part of a larger effort to create quality improvement (QI) processes that enhance ASD service delivery.
Methods: A randomized sample of 200 children with ASD and other DDs was selected from 1,133 individuals seen for diagnostic and medical services at a Midwest academic health center over a 6 month period. Parents were invited to complete the Quality of Care Survey by telephone (adapted from Family Voices, 2008). Ninety-eight parents (49%) completed demographic information and the 30-item survey, ranking each item on a Likert scale (0 = Never to 4 = Always; higher scores are better).
Results: The mean age of the sample was 10.92 (SD = 4.58); 47% were 3-11 years and 53% were 12-21; 79% were male; and 89% were Caucasian. Half reported an ASD diagnosis, and the remainder had either other developmental (48%) or physical health conditions (2%). The survey included four subscales that showed adequate internal consistency (>.75). Parents reported high levels of satisfaction on the Care & Support of the Child subscale (Md = 3.70, Range = 2-4) and Care Coordination subscale (Md = 3.50, Range = 0-4). Nearly all respondents (98%) reported that their providers listen to their concerns and 79% reported partnering with providers to make decisions for their child’s care (i.e., most of the time or always). Respondents indicated lower satisfaction on the Care & Support of the Family subscale (Md = 2.75, Range = 0-4) and on the Transition to Adulthood subscale (Md = 1.67, Range = 0-4; completed if child was 12 or older). The majority (78%) reported their providers rarely/never helped them write a plan for their youth’s transition to adult services and supports. Nearly two-thirds (63%) reported their providers rarely/never helped them connect with other families who share similar life situations. Overall satisfaction with quality of care varied by child age (M = 3.30 for younger vs. 2.89 for older children, p=.006) and by level of child functioning (M = 3.31 if condition affects child “some” vs. 2.95 if condition affects child “a great deal”, p=.033).
Conclusions: Survey results are consistent with national reports of unmet family needs and the vulnerability of youth in transition to adulthood (IACC, 2005; Kogan et al., 2008). These data provide a rich resource for QI initiatives in clinical settings and will guide development of best practices in health service delivery for those with ASD and their families.