Table 7 Final content: Sickle Cell Pain Diaries (SCPD-CS v1.0 and SCPD-CN v1.0)

For Electronic Administration

Age of child

1 item

1 item

School enrollment

1 item

1 item

During an SCPC: Presence, Duration, and Severity

Observed signs of SCPC

1 item

1 item

Duration of SCPC

2 items

2 items

Healthcare utilization due to SCPC

1 item

1 item

Medication use due to SCPC

2 items

2 items

Observed Interference of SCPC-related Pain on Daily Activities

Interference with…

Child’s school attendance

1 item

1 modified item: Preschool or Daycare

Caregiver’s paid work attendance

1 item

1 item

Child’s schoolwork

1 item

–

Child’s activities of daily living

1 item

1 item: Only if the child is 2 years or older

Child’s social and recreational activities

1 item

1 item: Only if the child is 2 years or older

Child’s sleep

1 item

1 item

Observed Impacts of SCPC-related Pain on Fatigue and Emotional Difficulty

Fatigue

1 item

1 item

Child’s emotional difficulty

1 item

1 item: Only if the child is 2 years or older

Caregiver’s emotional difficulty

1 item

1 item

Outside of an SCPC: Observed Pain, Fatigue, and Impacts of SCD

Signs of pain outside of an SCPC

1 item

1 item

Interference with sleep

1 item

1 item

Fatigue

1 item

1 item

Emotional difficulty

1 item

1 item: Only if the child is 2 years or older