RESUMEN
Autistic individuals experience high rates of behavioral crises that present to healthcare providers for medication management. Co-occurring psychiatric conditions and psychotropic medication use are common among this patient population. Particularly for those with limited expressive language, evaluating for the presence of psychiatric and medical conditions that could contribute to distress is a critical component of crisis management. A records review study was completed on 126 autistic individuals for whom medical decision-making support was requested from The Huntsman Mental Health Institute Neurobehavior Consultation Service. Crisis manifestations and historical information were provided by the parent or caregiver through an online questionnaire. Nearly all individuals presented with behavioral (96.8%) and emotional (96.8%) symptoms; 97.6% received at least one co-occurring psychiatric diagnosis. Additionally, 75.4% of parents or caregivers endorsed the presence of a medical condition that they believed could be contributing to the crisis presentation. Most individuals (92.1%) were prescribed at least one psychotropic medication; 69.8% were taking an antipsychotic, suggesting a history of treatment resistance. The alignment between psychotropic medications and psychiatric diagnoses was evaluated in the context of prior studies and reviews on psychiatric management in autistic and neurotypical populations. Several individuals were taking a combination of medications that included both indicated and contraindicated medications for the psychiatric disorder diagnosed, likely contributing to treatment resistance. Identifying discordance between psychotropic medication use and psychiatric conditions present offers an opportunity to pursue better treatment outcomes for autistic individuals, particularly for those experiencing treatment-resistant agitation.
RESUMEN
BACKGROUND: Individuals with developmental disabilities (DD) experience increased rates of emotional and behavioral crises that necessitate assessment and intervention. Psychiatric disorders can contribute to crises; however, screening measures developed for the general population are inadequate for those with DD. Medical conditions can exacerbate crises and merit evaluation. Screening tools using checklist formats, even when designed for DD, are too limited in depth and scope for crisis assessments. The Sources of Distress survey implements a web-based branching logic format to screen for common psychiatric and medical conditions experienced by individuals with DD by querying caregiver knowledge and observations. OBJECTIVE: This paper aims to (1) describe the initial survey development, (2) report on focus group and expert review processes and findings, and (3) present results from the survey's clinical implementation and evaluation of validity. METHODS: Sources of Distress was reviewed by focus groups and clinical experts; this feedback informed survey revisions. The survey was subsequently implemented in clinical settings to augment providers' psychiatric and medical history taking. Informal and formal consults followed the completion of Sources of Distress for a subset of individuals. A records review was performed to identify working diagnoses established during these consults. RESULTS: Focus group members (n=17) expressed positive feedback overall about the survey's content and provided specific recommendations to add categories and items. The survey was completed for 231 individuals with DD in the clinical setting (n=161, 69.7% men and boys; mean age 17.7, SD 10.3; range 2-65 years). Consults were performed for 149 individuals (n=102, 68.5% men and boys; mean age 18.9, SD 10.9 years), generating working diagnoses to compare survey screening results. Sources of Distress accuracy rates were 91% (95% CI 85%-95%) for posttraumatic stress disorder, 87% (95% CI 81%-92%) for anxiety, 87% (95% CI 81%-92%) for episodic expansive mood and bipolar disorder, 82% (95% CI 75%-87%) for psychotic disorder, 79% (95% CI 71%-85%) for unipolar depression, and 76% (95% CI 69%-82%) for attention-deficit/hyperactivity disorder. While no specific survey items or screening algorithm existed for unspecified mood disorder and disruptive mood dysregulation disorder, these conditions were caregiver-reported and working diagnoses for 11.7% (27/231) and 16.8% (25/149) of individuals, respectively. CONCLUSIONS: Caregivers described Sources of Distress as an acceptable tool for sharing their knowledge and insights about individuals with DD who present in crisis. As a screening tool, this survey demonstrates good accuracy. However, better differentiation among mood disorders is needed, including the addition of items and screening algorithm for unspecified mood disorder and disruptive mood dysregulation disorder. Additional validation efforts are necessary to include a more geographically diverse population and reevaluate mood disorder differentiation. Future study is merited to investigate the survey's impact on the psychiatric and medical management of distress in individuals with DD.