BEhavioral Health Stratified Treatment (BEST) Study for Youth With Intellectual and/or Developmental Disabilities (IDD)

The Patient Health Questionnaire Youths (PHQ-A) is a 9-item self-report measure of depressive symptomatology that has been shown to be both valid and reliable (α=.86-.89) (4-point Likert scale, 0-27 score range, higher score indicating more depressive symptoms/severity).This instrument has been used to assess depression in individuals with Autism Spectrum Disorder (ASD), cystic fibrosis and other I/DD.

The Patient Health Questionnaire 8 (PHQ-8) is an 8-item self-report measure of depressive symptomatology that has been shown to be both valid and reliable (4-point Likert scale, 0-24 score range, higher score indicating more depressive symptoms/severity). This instrument is a version of the PHQ-9 that does not include a question regarding suicidality. Participants in Group B, Tier 2 will receive this instrument during the course of the Tier 2 intervention (online group sessions). Participants in Group B, Tier 3 will receive this instrument during the course of the Tier 3 intervention (online group sessions).

The Generalized Anxiety Disorder (GAD-7) is a 7-item measure of anxiety symptomatology (4-point Likert scale, 0-21 score range, higher score indicating greater anxiety severity) that has been shown to be both valid and reliable (α=.92) and has been used to assess anxiety in individuals with ASD and other I/DD. Additionally, participants in Group B, Tier 2 will receive this instrument during the course of the Tier 2 intervention (online group sessions). Participants in Group B, Tier 3 will receive this instrument during the course of the Tier 3 intervention (online group sessions).

The Mini-International Neuropsychiatric Interview for Children and Youths (MINI Kid) is a structured diagnostic interview for Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V) and International Classification of Diseases, Tenth Revision (ICD-10) psychiatric disorders in children and adolescents. The 72-item (yes/no response choices) sub-scales to identify depression and anxiety disorders will be utilized. These scales have been found to be both valid and reliable, and have been used with individuals with ASD and other I/DD.

The Patient Health Questionnaire (PHQ-9) is a 9-item adult-report measure of depressive symptomatology (4-point Likert scale, 0-27 score range, higher score indicating more depressive symptoms/severity) that has shown to be valid and reliable (α=.86-.89).

The Generalized Anxiety Disorder (GAD-7) is a 7-item measure of anxiety symptomatology (4-point Likert scale, 0-21 score range, higher score indicating greater anxiety severity) that has been shown to be both valid and reliable (α=.92).

The Waisman Activities of Daily Living (W-ADL) Scale is a 17-item caregiver-report survey of activities of daily living (3-point Likert scale, 0-34 score range, higher score indicating greater independence), specifically developed for adolescents/adults with I/DD. It has good criterion and construct validity.

The Waisman Activities of Daily Living (W-ADL) Scale is a 17-item self-report survey of activities of daily living (3-point Likert scale, 0-34 score range, higher score indicating greater independence), specifically developed for adolescents/adults with I/DD. It has good criterion and construct validity.

The Short Form 8 (SF-8) is an 8-item measure of health-related quality of life (5- or 6-point Likert scale) that has been used in population health and outcome studies. A higher standardized total score indicates better health. The instrument has high validity and test-retest reliability.

The Youth Risk Behavior Survey (YRBS) examines 6 areas of health-related behaviors among youth and young adults. Seven items related to physical activity (score range 0 to 7 days/week), screen time (score range <1hr to 5+ hours/day), and sleep (<4hr to 10+ hr/day) will be utilized. Higher scores indicate more physical activity each week, greater screen time each day, and more sleep each night. This survey has been found to be valid and reliable for diverse populations, including I/DD).

The Car, Relax, Alone, Forget, Friends, Trouble (CRAFFT) screening tool is a 10-item (yes/no responses, with more yes responses indicating a higher probability of substance us/dependence), validated substance abuse screening tool for adolescents aged 12-21 years that is recommended by the American Academy of Pediatrics for preventive care screenings.

The Transition Readiness Assessment Questionnaire (TRAQ) is a 20-item (5-point Likert scale, 20-100 score range, higher score indicating greater skill in areas important for transition to adult health care), valid and reliable (α=0.93) tool that captures self-management, self-advocacy, and health care utilization skills. The tool has been used with diverse youth with IDD. The instrument will be delivered to both participants and caregivers at baseline and 12 and 24-months.

The Rotterdam Transition Profile (RTP) is a 6-item tool to summarize the transition profile of adolescents and young adults (3 or 4-point Likert scale, higher score indicating greater transition readiness), developed for use with individual with Cerebral Palsy.

The Generalized Self-Efficacy Scale (GSE) is a 10-item, valid and reliable (α=.76-.90) tool that captures the perceived ability to cope with adversity and perform various acts of daily living after experiencing a stressful life event (4-point Likert scale, 10-40 score range, higher score indicating greater self-efficacy). The instrument has been used with individuals with disabilities.

The Patient Assessment of Chronic Illness Care (PACIC) is a 20-item, self-report instrument (5-point Likert scale, 1-5 score range) with good internal reliability (α=0.93) and predictive validity that measures patient perceptions of care including delivery system follow-up and coordination. The instrument has 5 subscales (1-5 score range), and higher scores indicate better perceptions of care. The instrument has been used with individuals with I/DD. The instrument will be delivered to participants at 12-months.

The Connor Davidson-Resilience Scale (CD-RISC-10) is a 10-item, self-report instrument measuring resilience in terms of coping skills, including hardiness and persistence (4 levels of response, 0-40 score range, higher score indicating better coping skills). The instrument has good psychometric properties and has been used with individuals with I/DD, including ASD (α=.85).

The Brief Coping Orientation to Problems Experienced (COPE) is a 28-item tool that measures 14 types of coping strategies using a 4-point Likert scale. The internal consistency of the 14 two-item sub-scales ranges from .49 (venting) to .98 (substance use). Sub-scale total scores range from 4-8, and higher scores indicate greater endorsement of the coping strategy. In a sample of youth seeking medical care, 13 of the 14 sub-scales had an internal consistency above. This instrument is used with individuals with chronic disabilities.

The National Institutes of Health (NIH) Toolbox Perceived Stress is a 10-item, valid and reliable (α=.89-.91) instrument that measures subjective experience of stress (5-point Likert scale, 10-50 score range, higher score indicating greater perceived stress). The instrument has versions for those aged 13-17 years and those aged 18+ years. It has been used with individuals with neurological disorders.

The Children's Cognitive Style Questionnaire (CCSQ) is a 30-item, valid and reliable instrument that measures negative cognitive style which makes individuals vulnerable to anxiety and depression (5-point Likert scale, 0-150 score range, higher score indicating greater negativity of cognitive style). The instrument has been used with both children and adults with disabilities.

The Patient-Reported Outcomes Measurement Information System (PROMIS) Pediatric Peer Relationships v2.0 is a 15-item valid and reliable instrument that measures relationships and social support (5-point Likert scale, 15-75 score range, higher score indicating stronger peer relationships). The instrument has been used with individuals with chronic disease and disability.

The Perceived Stigma in Intellectual and Developmental Disabilities Scale is a 10-item (yes/no, 0-10 score range, higher scores indicating greater perceived stigma) instrument with good reliability (.83) that measures the scope of stigma experiences across life domains. The instrument will be delivered to participants at baseline and 12 and 24-months.

The Multidimensional Scale of Perceived Social Support (MSPSS) is a 12-item instrument with good validity and reliability (α=.94) that measures perceived social support from family, friends, and a significant other (7-point Likert scale, 7-84 score range, higher score indicating greater perceived social support). The instrument has been used with caregivers of children with I/DD.

The Adverse Family Experiences (AFE) questionnaire was developed for the National Survey of Child Health. It was validated by a technical panel and has been used in numerous peer-reviewed studies, in which clinically meaningful associations between cumulative AFE scores and child health outcomes were demonstrated. The Adverse Family Experiences questionnaire consists of 9 questions (2-point Likert scale, 0-9 score range, higher score indicating AFEs) about children's exposure to the following: neighborhood violence, racial/ethnic discrimination, income hardship, caregiver divorce, incarceration, death, domestic violence, substance abuse, and mental illness. This instrument has been used with caregivers of individuals with I/DD. The instrument will be delivered to caregivers at 12-months.

The Usefulness, Satisfaction, and Ease of Use Questionnaire (USE) is a 30-item, reliable (α =.97) measure of usability of technology and websites (30 items, self-report, 7-point Likert scale, 30-210 score range, higher score indicates greater usefulness, satisfaction, and ease of use). The instrument will be included for participants and caregivers at the end of the Tier 1 intervention (online module).

The Acceptability of Intervention Measure (AIM) is a 4-item, self-report measure of implementation success that has strong psychometric properties and reliability (α=.89) (5-point Likert scale, 1-5 score range, higher score indicates greater acceptability of intervention). This instrument will be included for participants at the end of the Tier 2 and Tier 3 interventions (i.e., at the completion of the online group sessions). Participants and caregivers will report on the instrument at baseline, 12- and 24-months.

The Personal Interests and Activities Subscale of the National Longitudinal Transition Study 2: Young Adult Questionnaire (NLTS2) includes 2-items (self-report, yes/no, yes indicates interaction with law enforcement) about youth interaction with law enforcement. The instrument will be delivered to participants at baseline and 12 and 24-months.

Participants will report on their date of birth, race/ethnicity, gender identity, household information, and school and employment status. They will also report on key demographics for the caregiver(s) they live with. Caregivers will also report on household/family information, including caregiver demographics, household structure, and socioeconomic status and insurance. They will also report on participant school and employment status. These items will be reported on at baseline and 24-months. Participants and caregivers will also report on the participant's clinical medication use and medical and psychiatric diagnoses at baseline, 12, and 24-months. At baseline, 12, and 24-months, participants and caregivers will also report on if the participant has ever (or currently) received individual or group therapy for mood or anxiety and if the participant has ever been hospitalized for depression or other mental health issues.