| Instrument | Who Completes | Timing |
---|---|---|---|
Demographic Information | Demographic Sheet | Completed by parent | Baseline and updated every 6 months |
Family Level Data | Family Adaptability and Cohesion Evaluation Scale (FACES III)[61] | Completed separately by each parent who agrees to participate in study | Baseline and every 6 months |
Couple Level Data | Norton Quality of Marriage Index[62] | Completed separately by each parent who agrees to participate in study, when currently in spousal/common-law relationship | Baseline and every 6 months |
Individual Level Data: Parent | • SF-12[63] • State-Trait Anxiety Inventory[64] • Center for Epidemiologic Studies Depression Scale (CES-D)[65] • Perceived Stress Scale[66] • Burden Scale[67] • Post-Traumatic Growth Inventory (PTGI)[68] • Spiritual Involvement and Beliefs Scales (SIBS)[69] • Grief Scale • Impact of Participation | Completed separately by each parent who agrees to participate in study | All at baseline and every 6 months, except for Impact of Participation (after 1 year and at end of study) |
Individual Level Data: Affected Child | • Clinical Symptoms | • Completed by parent | • Baseline and once a month |
 | • Pediatric Evaluation of Disability Inventory (PEDI©)[45–47] | • Completed by RA through observation or parent report | • Baseline and annually |
Individual Level Data: Sibling | • Kidcope[70] | • Younger version completed by siblings age 7 to 12 years; older version for 13 to 18 years | All at baseline and every 6 months |
 | • Child Behavior Checklist (CBCL)[71] | • Completed by parent for siblings age 7 to18 years |  |
 | • Youth Self Report (YSR)[72] | • Completed by siblings age 11 to18 years and able to complete by self |  |