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. Author manuscript; available in PMC: 2019 Nov 1.
Published in final edited form as: Contemp Clin Trials. 2018 Oct 11;74:88–96. doi: 10.1016/j.cct.2018.10.006

Table 3.

Study Measures

Measure Description of measure Respondent Time point administered
T1 T2 T3
Screening and background measures
Sickle Cell Pain Burden Interview Screen for SCD pain burden in the past month in six domains (pain, sleep, school, social, emotional, and function). Youth, Caregiver
Background questionnaire Report on sociodemographic variables (including family income), as well as access, use, and comfort with smartphones and internet technology. Youth, Caregiver
Treatment expectancies questionnaire Rate youth/caregivers expectations that the program will be useful and helpful. Youth, Caregiver
Adolescent Sleep Wake Scale: Insomnia Two items used to screen for insomnia symptoms in the past month. Used to screen for delivering the optional website module on insomnia. Youth
Primary outcome measures
Coping Strategies Questionnaire for Sickle Cell Disease Measure use of different strategies to cope with pain. Youth
Daily pain diary (7 day) Assess daily pain intensity (NRS-11), location, activity limitations, and mood. Completed daily for 7 days. Youth
Secondary outcome measures
Treatment Evaluation Inventory Assess perceptions and acceptability of the intervention. Youth, Caregiver
Patient’s Global Impression of Change Scale Assess perception of overall improvements since beginning the intervention. Youth
PROMIS Pediatric Profile Assess physical and emotional functioning including depressive symptoms, anxiety, mobility, pain interference, fatigue, and peer relationships in the past week. Depressive symptoms scale used to screen for delivering the optional website module on negative emotion. Youth
Adult Responses to Child Symptoms Assess caregiver response to youth pain behavior including protectiveness, minimizing, and encouraging. Caregiver
Bath Adolescent Pain Questionnaire Caregiver report of youth social functioning, physical functioning, depression, general anxiety, pain specific anxiety, development and femily functioning in the past two weeks. Caregiver
Client Service Receipt Inventory C ollect youth’s use of various health services (e.g., outpatient visits, emergency room visits, medications) over the past 6 months. Caregiver
Symptom Checklist 90 Assess caregiver psychological symptoms including obsessive compulsive, depression, and anxiety during the past week. Caregiver
Process measures (mediators)
iCanCope program usage App and website usage (e.g., number of logins, activity) at user leveL Youth, Caregiver
Multidimens io nal Scale of Perceived Social Support Assess social support from femily, friends, and significant others. Youth
Patient Activation Measure Assesses ability to self-manage health within the context of knowledge, skills, and confidence. Youth
Sickle Cell Self-Efficacy Scale Measure disease-specific perceptions of self- efficacy. Youth
Behavior Rating Inventory of Executive Function Report frequency of youth’s problem behaviors associated with executive function in the past 6 months. Caregiver