Survey Name | Respondent | Study visit month | ||||||
---|---|---|---|---|---|---|---|---|
Parent | Youth | 0 | 2 | 4 | 6 | 9 | 12 | |
Demographic survey | • | • | ||||||
Resource use questionnaire | • | • | • | • | • | • | • | |
Medication barriers scale | • | • | • | • | • | |||
Sickle cell family responsibility | • | • | • | • | • | • | ||
PedsQL generic core scalesa | • | • | • | • | • | • | ||
PedsQL sickle cell disease modulea | • | • | • | • | • | • | ||
Pain interference | • | • | • | • | • | • | • | • |
Pain intensity | • | • | • | • | • | • | • | • |
Fatigue | • | • | • | • | • | • | • | • |
Depressive symptoms | • | • | • | • | • | • | • | |
Emotional distress | • | • | • | • | • | • | • | |
Evaluationb | • | • | • | |||||
Comment cardsc | • | • | • | • | • | • | • |