JMIR Publications

ABSTRACT

Background:

Individuals with developmental disabilities (DD) experience increased rates of emotional and behavioral crises that necessitate assessment and intervention. Screening measures that query mental health symptoms in the general population are not adapted for individuals with DD. Medical conditions in this patient population can exacerbate crises and merit concurrent systematic screening as well. Sources of Distress (“Sources”) is a web-based, branching logic tool that was developed to query caregiver observations of symptoms for common psychiatric and medical conditions experienced by individuals with DD.

Objective:

To describe (1) Sources’ initial development, (2) evaluation and revision through a focus group content validation and expert review process, (3) and evaluation of validity in the clinical setting.

Methods:

Sources was reviewed by focus groups and clinical experts, and revisions were informed by this feedback. Sources was subsequently implemented in clinical settings to augment providers’ psychiatric and medical history-taking. Informal and formal consults followed Sources’ completion for a subset of individuals. A retrospective records review was performed to identify working diagnoses established during these consults.

Results:

Focus group members (N=17) expressed positive feedback overall for Sources’ content and provided specific recommendations to add categories and items. In the clinical setting, 264 Sources were completed on 231 individuals (161 males, 69 females, 1 other; mean age = 17.7 years, range: 2-65 years, SD=10.3). Most individuals had autism (n=190, 82.3%) with or without intellectual disability. Caregivers reported the presence of agitation in 200 individuals (86.6%) and identified a physical condition they perceived as contributing to distress for 169 individuals (73.2%). Psychotropic medication use was reported for 194 individuals (84%). Consults were performed for 151 individuals [68.2% male, mean age= 18.8 years (SD=10.9)]; working diagnoses established through these consults were used to define true positive case status for comparison with Sources’ screening results. Sources’ accuracy rates were as follows: post-traumatic stress disorder (90.7%), anxiety (87.4%), episodic expansive mood/bipolar disorder (87.4%), psychotic disorder (81.5%), unipolar depression (78.8%), and attention deficit hyperactivity disorder (76.2%). While no specific Sources items or screening algorithm exists for unspecified mood disorder/disruptive mood dysregulation disorder, this was a common caregiver-reported and working diagnosis (11.7% and 16.6%, respectively). This mood disorder was captured for most affected individuals (72.0%) through a positive screen for either unipolar depression or expansive mood/bipolar.

Conclusions:

Sources of Distress is an acceptable systematic means of collecting psychiatric and medical information on individuals with DD presenting with a behavioral or emotional crisis. As a screening tool, Sources demonstrates acceptable accuracy for most conditions though better differentiation among mood disorders is needed, including the addition of items and screening algorithm for unspecified mood disorder/disruptive mood dysregulation disorder. Future study is merited to evaluate Sources’ impact on the psychiatric and medical management of distress in individuals with DD. Clinical Trial: N/A