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 |
✓ |
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Treatment expectancies questionnaire |
Rate youth/caregivers expectations that the program will be useful and helpful. |
Youth, Caregiver |
✓ |
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|
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 |
✓ |
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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 |
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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 |
✓ |
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