Table 1 List of survey measures with descriptive details and method of administration
Measure | Description | Key domains/scales | Administration |
|---|---|---|---|
Financial, time, and employment costs across different life domains. Utilization and cost are both captured, when appropriate to the domain. Questions are framed to remind respondent to report focused on the child’s health care needs specifically | Mental health, medical, and other services. Includes medication and medical equipment School services related to the child’s health Childcare services related to the child’s health Home and informal health related activities related to the child’s health Employment Family finances | All time points. All health groups | |
Workplace Flexibility Scale [28] | Employer policies related to workplace flexibility | Work flexibility benefits offered Work flexibility benefits used | All time points. All health groups |
Pediatric Quality of Life Inventory (PedsQL) [29] | Child quality of life | Emotional functioning Social functioning School functioning Physical functioning | Baseline and Survey 3. All health groups |
Strengths and Difficulties Questionnaire (SDQ) [30] | Child behavioral problems | Emotional problems Conduct problems Hyperactivity Peer problems Prosocial Impact on the family of child behavioral problems score | Baseline only. All health groups |
Social Responsiveness Scale (SRS) [31] | ASD severity | A single ASD severity score | Baseline only. ASD only |
PROMIS Asthma Impact 8a (PROMIS-Asthma) [32] | Asthma severity | A single asthma severity score | All time points. Asthma only |
Parenting Stress Scale (PSS) [33] | Parental stress | Positive parenting experience score Negative parenting experience score | Baseline only. All health groups |
Caregiver Strain Questionnaire (CSQ) [34] | Parent/caregiver strain. Designed for families with members that have mental health problems | Objective caregiver strain Subjective caregiver strain | Baseline and Survey 3 ASD only |
Demographic and descriptive characteristics | Child, parent, family, and household characteristics | Baseline, Survey 3 All health groups |