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Poster #67 - Are Parents of Children with a Developmental Disorder Interested in Opportunities for Research?

Fri, March 22, 12:45 to 2:00pm, Baltimore Convention Center, Floor: Level 1, Exhibit Hall B

Integrative Statement

Introduction: Developmental disorders (DDs) are heterogeneous, childhood conditions that cause impairment in physical functioning, communication, cognition, adaptive skills, and/or behavior. Prevalence of DDs has risen dramatically over recent decades, especially among Autism Spectrum Disorders (ASD; CDC, 2018). Today, DDs affect at least one in six children in the US (Boyle et al., 2011). Despite growing prevalence, there has been a historical lag in development and dissemination of pharmacological and behavioral therapies to treat DDs. This dearth of interventions may reflect the challenges involved in study recruitment.

Non-response to research solicitation is a key barrier to recruitment. Potential reasons for non-response include parental disinterest, distrust, and lack of perceived benefit for the child or resources needed to participate. Many of these issues are likely exacerbated among low-income households and ethnic/racial minorities. Presently, little is known about interest in research engagement among parents of children with DD.

Objectives: To examine: 1) trends in caregiver consent to be contacted about future research opportunities and 2) child and family factors related consent.

Methods: Data were gathered from 2014 to 2017 in two pediatric outpatient clinics located in an urban, academic hospital setting (Child Mean Age=8.3y, SD=3.9y; 50% Caucasian, 32% African American; 19% other). One clinic focused on evaluation and treatment of ASD (N=5,040); the second provided psychological/neuropsychological evaluation of youth at risk for a variety of DDs (N=5,227). Primary outcome was parent consent (yes/no) to be contacted about future research opportunities. Consent forms were offered at appointment registration; nearly all parents (99%) responded. A variety of parent-reported demographic variables, as well as variables from mental health, medical, diagnostic, and clinician-administered assessments were gathered from the child’s medical record. A series of multiple logistic regression models examined changes in the probability of consent over time, within and across clinics, and predictors of consent. All models were adjusted for demographic factors and employed robust variance, to account for clustering.

Results: A high proportion of families consented to be contacted about future research opportunities across ASD (80%) and Neuropsychology (82%) clinics. As seen in Figure 1, there was a significant increase in consent over time for the ASD clinic (OR = 1.12, 95% CI: 1.06, 1.20); no significant change was observed in the Neuropsychology clinic (p=.18). The most robust child predictor of consent was parent-report of clinical (T-score >70) child mental health symptoms (OR = 1.44, 95% CI: 1.20, 1.73). Across both clinics, self-identified African American’s were less likely to consent in 2014 (OR = .63, 95% CI: .56, 1.71; all p<.01). However, this disparity no longer existed in 2017 within the ASD clinic (p=.08).

Discussion: This study highlights caregivers’ openness to engage in the research enterprise. Interestingly, child mental health symptoms predicted consent, while parental education, receipt of Medical Assistance/public insurance, and a host of other clinical factors appear to play little to no role in whether parents consented. Further work is needed to understand what uniquely motivates African Americans in the ASD community and how this success can be leveraged in other settings.

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