Protocol - Frequency of Sickle Cell Pain Episodes Per Year
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.
Availability
This protocol is freely available; permission not required for use.
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 (_)
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 (_)
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
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
Lifestage
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 |
|---|---|---|---|
| Human Phenotype Ontology | Anemia | OMIM:603903 | HPO |
| Human Phenotype Ontology | Sickle Cell | HP:0100749 | HPO |
| caDSR Form | PhenX PX830101 - Frequency Of Sickle Cell Pain Episodes Per Year | 6254586 | caDSR Form |
Derived Variables
None
Process and Review
The PhenX Sickle Cell Disease Research and Scientific Panel (SRSP) reviewed this protocol in May 2022. Guidance from the SRSP includes:
- Updated protocol
Protocol Name from Source
Cooperative Study of Sickle Cell Disease (CSSCD), Form 25 - Painful Episodes
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 | dbGaP Mapping | |
|---|---|---|---|---|
| PX830101_SCDPainSixMonths | ||||
| PX830101010100 | In the last 6 months, how many times did you more | N/A | ||
| PX830101_SCDPainSixMonths_Days | ||||
| PX830101030300 | How many days were missed? | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event1 | ||||
| PX830101010300 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event10 | ||||
| PX830101013900 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event2 | ||||
| PX830101010700 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event3 | ||||
| PX830101011100 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event4 | ||||
| PX830101011500 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event5 | ||||
| PX830101011900 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event6 | ||||
| PX830101012300 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event7 | ||||
| PX830101012700 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event8 | ||||
| PX830101013100 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Hospital_Event9 | ||||
| PX830101013500 | In the past six months, which hospital did more | N/A | ||
| PX830101_SCDPainSixMonths_Severity | ||||
| PX830101030100 | In the last 6 months, have you had a painful more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event1 | ||||
| PX830101010500 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event10 | ||||
| PX830101014100 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event2 | ||||
| PX830101010900 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event3 | ||||
| PX830101011300 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event4 | ||||
| PX830101011700 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event5 | ||||
| PX830101012100 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event6 | ||||
| PX830101012500 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event7 | ||||
| PX830101012900 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event8 | ||||
| PX830101013300 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainSixMonths_State_Event9 | ||||
| PX830101013700 | In the past six months, what state was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event1 | ||||
| PX830101020400 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event10 | ||||
| PX830101024000 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event2 | ||||
| PX830101020800 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event3 | ||||
| PX830101021200 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event4 | ||||
| PX830101021600 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event5 | ||||
| PX830101022000 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event6 | ||||
| PX830101022400 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event7 | ||||
| PX830101022800 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event8 | ||||
| PX830101023200 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_City_Event9 | ||||
| PX830101023600 | In the past twelve months, what city was the more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event1 | ||||
| PX830101020200 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event10 | ||||
| PX830101023800 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event2 | ||||
| PX830101020600 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event3 | ||||
| PX830101021000 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event4 | ||||
| PX830101021400 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event5 | ||||
| PX830101021800 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event6 | ||||
| PX830101022200 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event7 | ||||
| PX830101022600 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event8 | ||||
| PX830101023000 | In the past twelve months, what was the date more | N/A | ||
| PX830101_SCDPainTwelveMonths_Date_Event9 | ||||
| PX830101023400 | In the past twelve months, what was the date more | N/A | ||
Measure Name
Frequency of Sickle Cell Pain Episodes Per Year
Release Date
October 30, 2023
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
Measure Protocols
| Protocol ID | Protocol Name |
|---|---|
| 830101 | Frequency of Sickle Cell Pain Episodes Per Year |