Developing and Implementing a Web-Based Branching Logic Survey to Support Psychiatric Crisis Evaluations of Individuals With Developmental Disabilities: Qualitative Study and Evaluation of Validity.
A quick caregiver web survey spots six psychiatric conditions with 76-91% accuracy during DD crises.
01Research in Context
What this study did
A team built a short web survey for caregivers. It uses branching logic, so the next question changes based on the last answer.
They tested it during real psychiatric crises with people who have developmental disabilities. Clinicians compared survey results to their own final diagnoses.
What they found
The survey caught six common conditions: PTSD, anxiety, bipolar, psychosis, depression, and ADHD.
Accuracy ranged from 76% to 91%. That means three or four out of every four crisis diagnoses were already flagged by the caregiver survey.
How this fits with other research
Veldhuizen et al. (2017) showed that mild caregiver stress can actually improve questionnaire accuracy. The new survey keeps the caregiver voice front and center, matching that insight.
Glenn et al. (2013) tried a paper SDQ with adults who have Down syndrome. Sensitivity was too low for stand-alone use. The 2024 web tool adds branching logic and reaches higher accuracy, updating the older method.
Nah et al. (2018) used online screens for anxiety and depression in autistic adults. The crisis survey widens the net to six diagnoses and adds the urgency of a psychiatric emergency.
Why it matters
You now have a five-minute caregiver survey that can sit in your intake folder. Use it while the person is still in crisis. If the survey flags bipolar or PTSD, you can fast-track further assessment and avoid a long wait. It is not perfect, but it gives the team an early map when time matters most.
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02At a glance
03Original abstract
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. 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. 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. 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. 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.
JMIR Mental Health, 2024 · doi:10.2196/50907