This was a mixed-methods observational study that incorporated both qualitative interviews and longitudinal quantitative data collection through an online survey (initial, 2 months, and 4 months).
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
PROMIS-29 + 2 profile for adult self-report
Timeframe: Up to 4 months
PROMIS pediatric profile for adolescent self-Report and Caregiver-Proxy
Timeframe: Up to 4 months
PROMIS pediatric sleep disturbance for Adolescent Self-Report and Caregiver-Proxy
Timeframe: Up to 4 months
EQ-5D-5L for Adult self-report
Timeframe: Up to 4 months
EQ-5D-Youth for adolescent Self-Report and Caregiver-Proxy
Timeframe: Up to 4 months
Brief Pain Inventory for Adult Self-Report and Adolescent Self-Report
Timeframe: Up to 4 months
Global impression of symptom severity
Timeframe: Up to 4 months
Modified PROMIS dyspnea severity for adult Self-Report and Adolescent Self-Report
Timeframe: Up to 4 months