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Table 1 Survey completion by month for parents and youth

From: HABIT efficacy and sustainability trial, a multi-center randomized controlled trial to improve hydroxyurea adherence in youth with sickle cell disease: a study protocol

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  
  1. All surveys available in Spanish and English; aDifferent survey versions depending on youth age (8-12 years; 13-18 years); bDifferent survey versions for intervention and control groups; cCompleted by intervention group only