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Table 2 Instruments, Participant Who Completes, and Timing of Data Collection

From: Designing and implementing a longitudinal study of children with neurological, genetic or metabolic conditions: charting the territory

 

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

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