Protocol - Frequency of Sickle Cell Pain Episodes Per Year
Related Protocols:
Essential Protocols:
Description:
This protocol includes three self-administered questions from the Cooperative Study of Sickle Cell Disease (CSSCD) that capture number of painful episodes that required visits to the emergency room or hospital or interfered with daily activities.
Specific Instructions:
The Sickle Cell Disease Research and Scientific Panel (SRSP) notes that a pain episode is pain lasting at least two hours that requires an unscheduled emergency room visit or hospitalization or that disrupts daily activities.
The SRSP suggests that this protocol could be administered to adolescents younger than 18 and to young children via a proxy.
Protocol:
PAINFUL EVENTS - Number of visits should include visits to BOTH your hospital AND outside hospitals.
1. In the last 6 months, how many times did you visit an emergency room because of a sickle cell painful event?
Number of times (_)
| DATE OF VISIT | NAME OF HOSPITAL, CITY, STATE |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
2. In the last 12 months, how many times were you admitted to a hospital because of a sickle cell painful event?
Number of times (_)
| DATE OF HOSPITALIZATION | NAME OF HOSPITAL, CITY, STATE |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
| ______________ | _________________________________________________ |
3. In the last 6 months, have you had a painful episode severe enough to keep you from doing the usual daily activities, but without being seen by a doctor?
[ ] No
[ ] Yes
a. How many episodes
[ ] <4
[ ] >=4
b. How many days were missed?
[ ] <= a week
[ ] > a week
Protocol Name from Source:
This section will be completed when reviewed by an Expert Review Panel.
Availability:
Personnel and Training Required
None
Equipment Needs
None
Requirements
| Requirement Category | Required |
|---|---|
| Major equipment | No |
| Specialized training | No |
| Specialized requirements for biospecimen collection | No |
| Average time of greater than 15 minutes in an unaffected individual | No |
Mode of Administration
Self-administered questionnaire
Life Stage:
Adult
Participants:
Adults, ages 18 and older
Selection Rationale
These self-administered questions from the Cooperative Study of Sickle Cell Disease (CSSCD) are validated, well established and easy to implement and interpret.
Language
English
Standards
| Standard | Name | ID | Source |
|---|---|---|---|
| Common Data Elements (CDE) | Sickle Cell Disease Pain Episode Frequency Assessment Text | 4924414 | CDE Browser |
Derived Variables
None
Process and Review
This section will be completed when reviewed by an Expert Review Panel.
Source
U.S. Department of Health and Human Services. National Institutes of Health. National Heart, Lung, and Blood Institute (NHLBI). Cooperative Study of Sickle Cell Disease (CSSCD). Form 25 - Painful Episodes. Questions 7a, 7b, and 7c.
General References
Platt, O.S., Brambilla, D.J., Rosse, W.F., Milner, P.F., Castro, O., Steinberg, M.H., & Klug, P.P. (1994). Mortality in sickle cell disease. Life expectancy and risk factors for early death. New England Journal of Medicine 330(23), 1639-1644.
Platt, O.S., Thorington, B.D., Brambilla, D.J., Milner, P.F., Rosse, W.F., Vichinsky, E., & Kinney, T.R. (1991). Pain in sickle cell disease. Rates and risk factors. New England Journal of Medicine 325(1), 11-16.
Wallen, G.R., Minniti, C.P., Krumlauf, M., Eckes, E., Allen, D., Oguhebe, A., Seamon, C., Darbari, D.S., Hildesheim, M., Yang, L., Schulden, J.D., Kato, G.J., & Taylor JG 6th. (2014). Sleep disturbance, depression and pain in adults with sickle cell disease. BMC Psychiatry 14, 207.
Protocol ID:
830101
Variables:
Export Variables| Variable Name | Variable ID | Variable Description | Version | dbGaP Mapping |
|---|---|---|---|---|
| PX830101_SCDPainSixMonths | PX830101010100 | In the last 6 months, how many times did you visit an emergency room because of a sickle cell painful event? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event1 | PX830101010400 | In the past six months, what city was the hospital (Event1) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event10 | PX830101014000 | In the past six months, what city was the hospital (Event10) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event2 | PX830101010800 | In the past six months, what city was the hospital (Event2) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event3 | PX830101011200 | In the past six months, what city was the hospital (Event3) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event4 | PX830101011600 | In the past six months, what city was the hospital (Event4) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event5 | PX830101012000 | In the past six months, what city was the hospital (Event5) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event6 | PX830101012400 | In the past six months, what city was the hospital (Event6) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event7 | PX830101012800 | In the past six months, what city was the hospital (Event7) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event8 | PX830101013200 | In the past six months, what city was the hospital (Event8) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_City_Event9 | PX830101013600 | In the past six months, what city was the hospital (Event9) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event1 | PX830101010200 | In the past six months, what was the date of Event1? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event10 | PX830101013800 | In the past six months, what was the date of Event10? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event2 | PX830101010600 | In the past six months, what was the date of Event2? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event3 | PX830101011000 | In the past six months, what was the date of Event3? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event4 | PX830101011400 | In the past six months, what was the date of Event4? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event5 | PX830101011800 | In the past six months, what was the date of Event5? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event6 | PX830101012200 | In the past six months, what was the date of Event6? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event7 | PX830101012600 | In the past six months, what was the date of Event7? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event8 | PX830101013000 | In the past six months, what was the date of Event8? | 4 | N/A |
| PX830101_SCDPainSixMonths_Date_Event9 | PX830101013400 | In the past six months, what was the date of Event9? | 4 | N/A |
| PX830101_SCDPainSixMonths_Days | PX830101030300 | How many days were missed? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event1 | PX830101010300 | In the past six months, which hospital did you go for Event1? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event10 | PX830101013900 | In the past six months, which hospital did you go for Event10? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event2 | PX830101010700 | In the past six months, which hospital did you go for Event2? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event3 | PX830101011100 | In the past six months, which hospital did you go for Event3? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event4 | PX830101011500 | In the past six months, which hospital did you go for Event4? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event5 | PX830101011900 | In the past six months, which hospital did you go for Event5? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event6 | PX830101012300 | In the past six months, which hospital did you go for Event6? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event7 | PX830101012700 | In the past six months, which hospital did you go for Event7? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event8 | PX830101013100 | In the past six months, which hospital did you go for Event8? | 4 | N/A |
| PX830101_SCDPainSixMonths_Hospital_Event9 | PX830101013500 | In the past six months, which hospital did you go for Event9? | 4 | N/A |
| PX830101_SCDPainSixMonths_Number | PX830101030200 | How many episodes? | 4 | N/A |
| PX830101_SCDPainSixMonths_Severity | PX830101030100 | In the last 6 months, have you had a painful episode severe enough to keep you from doing the usual daily activities, but without being seen by a doctor? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event1 | PX830101010500 | In the past six months, what state was the hospital (Event1) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event10 | PX830101014100 | In the past six months, what state was the hospital (Event10) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event2 | PX830101010900 | In the past six months, what state was the hospital (Event2) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event3 | PX830101011300 | In the past six months, what state was the hospital (Event3) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event4 | PX830101011700 | In the past six months, what state was the hospital (Event4) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event5 | PX830101012100 | In the past six months, what state was the hospital (Event5) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event6 | PX830101012500 | In the past six months, what state was the hospital (Event6) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event7 | PX830101012900 | In the past six months, what state was the hospital (Event7) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event8 | PX830101013300 | In the past six months, what state was the hospital (Event8) in? | 4 | N/A |
| PX830101_SCDPainSixMonths_State_Event9 | PX830101013700 | In the past six months, what state was the hospital (Event9) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths | PX830101020100 | In the last 12 months, how many times did you visit an emergency room because of a sickle cell painful event? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event1 | PX830101020400 | In the past twelve months, what city was the hospital (Event1) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event10 | PX830101024000 | In the past twelve months, what city was the hospital (Event10) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event2 | PX830101020800 | In the past twelve months, what city was the hospital (Event2) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event3 | PX830101021200 | In the past twelve months, what city was the hospital (Event3) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event4 | PX830101021600 | In the past twelve months, what city was the hospital (Event4) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event5 | PX830101022000 | In the past twelve months, what city was the hospital (Event5) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event6 | PX830101022400 | In the past twelve months, what city was the hospital (Event6) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event7 | PX830101022800 | In the past twelve months, what city was the hospital (Event7) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event8 | PX830101023200 | In the past twelve months, what city was the hospital (Event8) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_City_Event9 | PX830101023600 | In the past twelve months, what city was the hospital (Event9) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event1 | PX830101020200 | In the past twelve months, what was the date of Event1? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event10 | PX830101023800 | In the past twelve months, what was the date of Event10? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event2 | PX830101020600 | In the past twelve months, what was the date of Event2? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event3 | PX830101021000 | In the past twelve months, what was the date of Event3? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event4 | PX830101021400 | In the past twelve months, what was the date of Event4? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event5 | PX830101021800 | In the past twelve months, what was the date of Event5? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event6 | PX830101022200 | In the past twelve months, what was the date of Event6? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event7 | PX830101022600 | In the past twelve months, what was the date of Event7? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event8 | PX830101023000 | In the past twelve months, what was the date of Event8? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Date_Event9 | PX830101023400 | In the past twelve months, what was the date of Event9? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event1 | PX830101020300 | In the past twelve months, which hospital did you go for Event1? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event10 | PX830101023900 | In the past twelve months, which hospital did you go for Event10? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event2 | PX830101020700 | In the past twelve months, which hospital did you go for Event2? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event3 | PX830101021100 | In the past twelve months, which hospital did you go for Event3? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event4 | PX830101021500 | In the past twelve months, which hospital did you go for Event4? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event5 | PX830101021900 | In the past twelve months, which hospital did you go for Event5? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event6 | PX830101022300 | In the past twelve months, which hospital did you go for Event6? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event7 | PX830101022700 | In the past twelve months, which hospital did you go for Event7? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event8 | PX830101023100 | In the past twelve months, which hospital did you go for Event8? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_Hospital_Event9 | PX830101023500 | In the past twelve months, which hospital did you go for Event9? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event1 | PX830101020500 | In the past twelve months, what state was the hospital (Event1) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event10 | PX830101024100 | In the past twelve months, what state was the hospital (Event10) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event2 | PX830101020900 | In the past twelve months, what state was the hospital (Event2) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event3 | PX830101021300 | In the past twelve months, what state was the hospital (Event3) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event4 | PX830101021700 | In the past twelve months, what state was the hospital (Event4) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event5 | PX830101022100 | In the past twelve months, what state was the hospital (Event5) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event6 | PX830101022500 | In the past twelve months, what state was the hospital (Event6) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event7 | PX830101022900 | In the past twelve months, what state was the hospital (Event7) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event8 | PX830101023300 | In the past twelve months, what state was the hospital (Event8) in? | 4 | N/A |
| PX830101_SCDPainTwelveMonths_State_Event9 | PX830101023700 | In the past twelve months, what state was the hospital (Event9) in? | 4 | N/A |
Measure Name:
Frequency of Sickle Cell Pain Episodes Per Year
Release Date:
July 30, 2015
Definition
A questionnaire to capture the frequency of acute pain episodes due to sickle cell disease (SCD).
Purpose
Frequency of acute sickle cell pain episodes is correlated with disease severity and early mortality.
Keywords
Pain, sickle cell disease, SCD, frequency of sickle cell pain episodes, work absence, school absence