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Table 6 Sample of items added to the SCPD-C v.01 as a result of caregiver feedback from Round One

From: Content validation of observer-reported sickle cell pain diaries (SCPD-CS and SCPD-CN): results from interviews with caregivers

Rationale

Representative Caregiver Quote

Item Added to the SCPD-C v.02

All 6 caregivers reported that SCPCs had an impact on their child’s emotional health

I would ask, ‘How does sickle cell affect the persons as a whole, emotionally? What are the thoughts behind a person with sickle cell, they are feeling?’ Things like that, because when you go into those—and you ask someone, I am sure if they were asked, because I ask them all the time, and he just wish it didn’t happen. Most time they wish it didn’t happen, and the main question that I get is, ‘Am I going to die?’

Based on your observation, how much emotional difficulty did your child experience due to his or her sickle cell disease during the past 24 h (for example, being irritated or mad, worried or afraid, or feeling very sad)?

Four of 6 caregivers reported an impact on their emotional health as a result of their child’s SCPC

I think sometimes it affects the parent, so I know you've given the gauge in how it affects the child… it affects the parent watching the child go through it. So that’s another part… I’m so sorry. I’m sniffling

How much emotional difficulty did you experience due to your child’s sickle cell pain crisis during the past 24 h (for example, stress, anxiety, sadness, or depression)?

Caregivers discussed a tendency to go to the hospital when their child is experiencing a pain crisis. Two of 6 caregivers endorsed adding an item related to healthcare utilization

I can't count how many times we have gone to the emergency department. In the last year usually, it's just a blood test, they say it's a common cold or some little virus and they send us home, but for a while it meant an overnight stay for a couple days

Did the pain crisis lead to a visit with your child's primary care doctor, urgent care center, or emergency department during the past 24 h?