Observational studies evaluating responsiveness of PROMIS pain domains and SCD-specific PRO measures
| Author, y . | Age, y . | Number of subjects . | Study setting (inpatient, outpatient) . | Type of pain assessed, acute or chronic . | PRO pain instrument studied . | Study design . | Main outcome . |
|---|---|---|---|---|---|---|---|
| Dampier, 2016 | 8-17 | 121 | At discharge for acute pain exacerbation (inpatient), follow up weeks later after exacerbation (outpatient), clinical visit 1-2 years later (outpatient) | Acute | Pediatric PROMIS Pain Interference domain (child self-report) | Prospective | • PROMIS pain interference domain is responsive to changes in acute vaso-occlusive pain. |
| • Effect sizes were not published; data include significant mean differences with SE between baseline and acute pain. | |||||||
| Panepinto, 2017 | 4-21 | 187 | At admission for acute pain exacerbation (inpatient), 1 wk later by phone (outpatient), clinical visit 1-3 mo later (outpatient) | Acute | PedsQL SCD Module (Pain and Hurt, Pain Impact, Pain Management and Control; child self-report) | Prospective, ancillary to a clinical trial | • PedsQL SCD Pain and Hurt, Pain Impact and Pain Management and Control domains were responsive to changes in acute pain. |
| • Effect sizes for child self-report as follows: Pain and Hurt (0.91), Pain Impact (0.84), Pain Management and Control (0.45). | |||||||
| • Parent proxy-report effect sizes available as supplemental material in paper. |
| Author, y . | Age, y . | Number of subjects . | Study setting (inpatient, outpatient) . | Type of pain assessed, acute or chronic . | PRO pain instrument studied . | Study design . | Main outcome . |
|---|---|---|---|---|---|---|---|
| Dampier, 2016 | 8-17 | 121 | At discharge for acute pain exacerbation (inpatient), follow up weeks later after exacerbation (outpatient), clinical visit 1-2 years later (outpatient) | Acute | Pediatric PROMIS Pain Interference domain (child self-report) | Prospective | • PROMIS pain interference domain is responsive to changes in acute vaso-occlusive pain. |
| • Effect sizes were not published; data include significant mean differences with SE between baseline and acute pain. | |||||||
| Panepinto, 2017 | 4-21 | 187 | At admission for acute pain exacerbation (inpatient), 1 wk later by phone (outpatient), clinical visit 1-3 mo later (outpatient) | Acute | PedsQL SCD Module (Pain and Hurt, Pain Impact, Pain Management and Control; child self-report) | Prospective, ancillary to a clinical trial | • PedsQL SCD Pain and Hurt, Pain Impact and Pain Management and Control domains were responsive to changes in acute pain. |
| • Effect sizes for child self-report as follows: Pain and Hurt (0.91), Pain Impact (0.84), Pain Management and Control (0.45). | |||||||
| • Parent proxy-report effect sizes available as supplemental material in paper. |