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).
Age range
5 Years – 99 Years
Sex
ALL
See this in plain English?
AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Bring these to your next appointment. They're a starting point for a shared conversation — not a sign you qualify or a recommendation to enrol.
Generated to help you prepare — always confirm anything about your own eligibility and care with the study team and your doctor.
The trial coordinator is the person who runs the study day to day. These cover the practical side — logistics, costs, and what taking part would actually mean for your life. The study team confirms whether you meet the criteria; these are questions to ask, not a sign you qualify.
A starting point for the conversation — always confirm anything about your own eligibility, costs, and care with the study team and your doctor.
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