Table 1 Prioritized symptom domains and related clinical outcome assessments
Domain | Clinical outcome assessment and description | Number of interviewees reporting on COA |
|---|---|---|
Communication and relationships | Vineland Adaptive Behavior Scales-3 Parent/Caregiver Form: Listening and Understanding Caregiver-reported measure of attending, understanding, and responding appropriately to information from others [30] | 9 |
Vineland-3 Parent/Caregiver Form: Talking Caregiver-reported measure of using words and sentences to express oneself verbally to others [30] | 9 | |
Vineland-3 Parent/Caregiver Form: Relating to Others Caregiver-reported measure of responding and relating to others, including friendships, caring, social appropriateness, and conversation [30] | Not used for interviews | |
Eating/swallowing | Child Oral and Motor Proficiency Scale (ChOMPS) Caregiver-reported assessment of eating, drinking, and related skills in children 6 months to 7 years of age [31] | 10 |
Sleep | Children’s Sleep Habits Questionnaire (CSHQ) Caregiver–reported questionnaire to examine sleep behavior in young children [32] | 10 |
Sleep Diary Caregiver-reported diary completed daily to gather information about sleep patterns | Not used for interviews | |
Getting around | Timed Four Stair Climb Clinician assessed time to climb 4 standard-sized stairs [33] | 19 |
Floor to Stand Test Clinician assessed time to stand from a supine position [33] | Not used for interviews | |
Vineland-3 Parent/Caregiver Form: Using Large Muscles Caregiver-reported physical skills in using arms and legs for movement and coordination in daily life [30] | Not used for interviews | |
Vineland-3 Parent/Caregiver Form: Using Small Muscles Caregiver-reported physical skills in using hands and fingers to manipulate objects in daily life [30] | Not used for interviews | |
Pain | Non-Communicating Child’s Pain Checklist-Revised (NCCPC-R) Caregiver-reported pain measurement tool specifically designed for children with cognitive impairments [34] | 9 |
Behavior | Aberrant Behavior Checklist (ABC) Caregiver-reported problematic behaviors for people with developmental disabilities [35] | 10 |
Vineland-3 Parent/Caregiver Form: Caring for Home Caregiver-reported assessment of household tasks such as cleaning up after oneself, chores, and food preparation [30] | Not used for interviews | |
Adapting | Vineland-3 Parent/Caregiver Form: Adapting Caregiver-reported behavioral and emotional control in new/different situations involving other people [30] | 9 |
Caring for self | Vineland-3 Parent/Caregiver Form: Caring for Self Caregiver-reported self-sufficiency in such areas as eating, dressing, washing, hygiene, and health care [30] | Not used for interviews |