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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