Table 1.

Description of Sources of Distress and additions in response to focus group feedback.

Module	Original items	Added in response to feedback
Introduction and demographics	Respondent’s relationship to the individual who is affected Distress symptoms Language ability Age Known diagnoses Current medications	For professional caregivers: how long have you known the affected individual? Added “increased fixation on certain things” and “changes in behavior such as increased isolation, social withdrawal” to distress symptoms Is there a difference in language ability at the physician’s office? If so, is there something the provider can do to improve the individual’s ability to speak for themselves?
Behavior patterns and triggers	Circumstances of disruptive behavior (recognized triggers, patterns, motivation and reinforcement, and location)	Query perceived function to behavior surrounding distress
Sleep	Time of sleep onset and awakening Middle-of-the-night interruptions Naps Activities interfering with sleep onset or returning to sleep Intermittent periods of decreased need for sleep	Food seeking as an activity interfering with sleep Sleep apnea diagnosis and symptoms Discomfort precipitating sleep disturbance
Anxiety	Leading to significant outbursts or discomfort: transitioning activities, getting stuck on certain topics or things, and minor changes in daily activities	Panic and nightmares Sensory sensitivity that leads to discomfort Repeated checking or rituals, which interferes with daily activities
Depression	Less energy than usual, increased crying spells, sadness, irritability, isolative, loss of interest in activities typically enjoyed, and excess sleep Injures self on purpose; if yes: location of injury and whether self-injury is causing discomfort?	Whether self-injury is concerning to parent or caregiver Whether self-injury could be perpetuated by attention seeking or avoidance
Mania	Establish baseline energy Query discrete periods out of the blue lasting ≥2 days of increased energy compared to baseline, laughing or vocalizing for no clear reason, particularly happy or giddy, risk taking, sexually acting out, increased impulsivity, and decreased need for sleep	No changes made
Psychosis	Appearing to be responding to internal auditory or visual stimuli Yelling angrily in a room where no one else is present as if yelling at someone who is not there	No changes made
ADHDa	Difficulty following through on instructions, avoiding task demands, easily distractible, fidgety or restless, high activity when expected to remain in 1 place, constantly moving, blurting into other people’s conversations, and demanding attention or desired items	Excessive talking
General medical problems	Query history of headaches, seizures, injuries that can be causing discomfort, thyroid abnormalities, and tooth pain Could any of these issues be contributing to distress?	Are there unusual ways of responding to physical discomfort? Added joint pain; ear, nose, or throat pain; and seasonal allergies
Traumab	N/Ac	History of trauma Related to trauma: avoidance, flashbacks, and nightmares Hypervigilance
Gastrointestinal concernsb	N/A	Bowel movement frequency Query history of constipation, stool accidents, frequent stomachaches, food allergies, and acid reflux. Could any of these issues contribute to distress? Subsequent additions: changes in appetite, nausea, and variable bowel movements
Menstrual concernsb (for female patients only)	N/A	Query presence of mood changes during menses, endometriosis, polycystic ovary syndrome, significant menstrual pain, excess bleeding during or between cycles, and anxiety surrounding periods. Could any of these conditions be leading to distress? Birth control: oral contraceptives, hormonal IUDd, nonhormonal IUD, and Depo-Provera (a contraceptive injection).
Dental concernsb	N/A	When was the last dental visit? Query presence of changes in eating patterns: texture preference, sensitivity to hot or cold food or drink preference for eating on 1 side of the mouth, and reduced oral intake Grinding teeth

^aADHD: attention-deficit/hyperactivity disorder.

^bModule added in response to focus group feedback.

^cN/A: not applicable.

^dIUD: intrauterine device.