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Protocol - Frequency of Sickle Cell Pain Episodes Per Year

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Protocol Name from Source:

This section will be completed when reviewed by an Expert Review Panel.

Availability:

Publicly available

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.

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

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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

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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 CategoryRequired
Average time of greater than 15 minutes in an unaffected individualNo
Major equipmentNo
Specialized requirements for biospecimen collectionNo
Specialized trainingNo

Mode of Administration

Self-administered

Life Stage:

Adult

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.

Research Domain Information

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.

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

StandardNameIDSource
Common Data Elements (CDE)Sickle Cell Disease Pain Episode Frequency Assessment Text4924414CDE Browser

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 NameVariable IDVariable DescriptionVersiondbGaP Mapping
PX830101_SCDPainSixMonthsPX830101010100In the last 6 months, how many times did you visit an emergency room because of a sickle cell painful event?4N/A
PX830101_SCDPainSixMonths_Date_Event1PX830101010200In the past six months, what was the date of Event1?4N/A
PX830101_SCDPainSixMonths_Hospital_Event1PX830101010300In the past six months, which hospital did you go for Event1?4N/A
PX830101_SCDPainSixMonths_City_Event1PX830101010400In the past six months, what city was the hospital (Event1) in?4N/A
PX830101_SCDPainSixMonths_State_Event1PX830101010500In the past six months, what state was the hospital (Event1) in?4N/A
PX830101_SCDPainSixMonths_Date_Event2PX830101010600In the past six months, what was the date of Event2?4N/A
PX830101_SCDPainSixMonths_Hospital_Event2PX830101010700In the past six months, which hospital did you go for Event2?4N/A
PX830101_SCDPainSixMonths_City_Event2PX830101010800In the past six months, what city was the hospital (Event2) in?4N/A
PX830101_SCDPainSixMonths_State_Event2PX830101010900In the past six months, what state was the hospital (Event2) in?4N/A
PX830101_SCDPainSixMonths_Date_Event3PX830101011000In the past six months, what was the date of Event3?4N/A
PX830101_SCDPainSixMonths_Hospital_Event3PX830101011100In the past six months, which hospital did you go for Event3?4N/A
PX830101_SCDPainSixMonths_City_Event3PX830101011200In the past six months, what city was the hospital (Event3) in?4N/A
PX830101_SCDPainSixMonths_State_Event3PX830101011300In the past six months, what state was the hospital (Event3) in?4N/A
PX830101_SCDPainSixMonths_Date_Event4PX830101011400In the past six months, what was the date of Event4?4N/A
PX830101_SCDPainSixMonths_Hospital_Event4PX830101011500In the past six months, which hospital did you go for Event4?4N/A
PX830101_SCDPainSixMonths_City_Event4PX830101011600In the past six months, what city was the hospital (Event4) in?4N/A
PX830101_SCDPainSixMonths_State_Event4PX830101011700In the past six months, what state was the hospital (Event4) in?4N/A
PX830101_SCDPainSixMonths_Date_Event5PX830101011800In the past six months, what was the date of Event5?4N/A
PX830101_SCDPainSixMonths_Hospital_Event5PX830101011900In the past six months, which hospital did you go for Event5?4N/A
PX830101_SCDPainSixMonths_City_Event5PX830101012000In the past six months, what city was the hospital (Event5) in?4N/A
PX830101_SCDPainSixMonths_State_Event5PX830101012100In the past six months, what state was the hospital (Event5) in?4N/A
PX830101_SCDPainSixMonths_Date_Event6PX830101012200In the past six months, what was the date of Event6?4N/A
PX830101_SCDPainSixMonths_Hospital_Event6PX830101012300In the past six months, which hospital did you go for Event6?4N/A
PX830101_SCDPainSixMonths_City_Event6PX830101012400In the past six months, what city was the hospital (Event6) in?4N/A
PX830101_SCDPainSixMonths_State_Event6PX830101012500In the past six months, what state was the hospital (Event6) in?4N/A
PX830101_SCDPainSixMonths_Date_Event7PX830101012600In the past six months, what was the date of Event7?4N/A
PX830101_SCDPainSixMonths_Hospital_Event7PX830101012700In the past six months, which hospital did you go for Event7?4N/A
PX830101_SCDPainSixMonths_City_Event7PX830101012800In the past six months, what city was the hospital (Event7) in?4N/A
PX830101_SCDPainSixMonths_State_Event7PX830101012900In the past six months, what state was the hospital (Event7) in?4N/A
PX830101_SCDPainSixMonths_Date_Event8PX830101013000In the past six months, what was the date of Event8?4N/A
PX830101_SCDPainSixMonths_Hospital_Event8PX830101013100In the past six months, which hospital did you go for Event8?4N/A
PX830101_SCDPainSixMonths_City_Event8PX830101013200In the past six months, what city was the hospital (Event8) in?4N/A
PX830101_SCDPainSixMonths_State_Event8PX830101013300In the past six months, what state was the hospital (Event8) in?4N/A
PX830101_SCDPainSixMonths_Date_Event9PX830101013400In the past six months, what was the date of Event9?4N/A
PX830101_SCDPainSixMonths_Hospital_Event9PX830101013500In the past six months, which hospital did you go for Event9?4N/A
PX830101_SCDPainSixMonths_City_Event9PX830101013600In the past six months, what city was the hospital (Event9) in?4N/A
PX830101_SCDPainSixMonths_State_Event9PX830101013700In the past six months, what state was the hospital (Event9) in?4N/A
PX830101_SCDPainSixMonths_Hospital_Event10PX830101013900In the past six months, which hospital did you go for Event10?4N/A
PX830101_SCDPainSixMonths_City_Event10PX830101014000In the past six months, what city was the hospital (Event10) in?4N/A
PX830101_SCDPainSixMonths_State_Event10PX830101014100In the past six months, what state was the hospital (Event10) in?4N/A
PX830101_SCDPainTwelveMonthsPX830101020100In the last 12 months, how many times did you visit an emergency room because of a sickle cell painful event?4N/A
PX830101_SCDPainTwelveMonths_Date_Event1PX830101020200In the past twelve months, what was the date of Event1?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event1PX830101020300In the past twelve months, which hospital did you go for Event1?4N/A
PX830101_SCDPainTwelveMonths_City_Event1PX830101020400In the past twelve months, what city was the hospital (Event1) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event1PX830101020500In the past twelve months, what state was the hospital (Event1) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event2PX830101020600In the past twelve months, what was the date of Event2?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event2PX830101020700In the past twelve months, which hospital did you go for Event2?4N/A
PX830101_SCDPainTwelveMonths_City_Event2PX830101020800In the past twelve months, what city was the hospital (Event2) in?4N/A
PX830101_SCDPainSixMonths_Date_Event10PX830101013800In the past six months, what was the date of Event10?4N/A
PX830101_SCDPainTwelveMonths_State_Event2PX830101020900In the past twelve months, what state was the hospital (Event2) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event3PX830101021000In the past twelve months, what was the date of Event3?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event3PX830101021100In the past twelve months, which hospital did you go for Event3?4N/A
PX830101_SCDPainTwelveMonths_City_Event3PX830101021200In the past twelve months, what city was the hospital (Event3) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event3PX830101021300In the past twelve months, what state was the hospital (Event3) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event4PX830101021400In the past twelve months, what was the date of Event4?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event4PX830101021500In the past twelve months, which hospital did you go for Event4?4N/A
PX830101_SCDPainTwelveMonths_City_Event4PX830101021600In the past twelve months, what city was the hospital (Event4) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event4PX830101021700In the past twelve months, what state was the hospital (Event4) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event5PX830101021800In the past twelve months, what was the date of Event5?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event5PX830101021900In the past twelve months, which hospital did you go for Event5?4N/A
PX830101_SCDPainTwelveMonths_City_Event5PX830101022000In the past twelve months, what city was the hospital (Event5) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event5PX830101022100In the past twelve months, what state was the hospital (Event5) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event6PX830101022200In the past twelve months, what was the date of Event6?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event6PX830101022300In the past twelve months, which hospital did you go for Event6?4N/A
PX830101_SCDPainTwelveMonths_City_Event6PX830101022400In the past twelve months, what city was the hospital (Event6) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event6PX830101022500In the past twelve months, what state was the hospital (Event6) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event7PX830101022600In the past twelve months, what was the date of Event7?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event7PX830101022700In the past twelve months, which hospital did you go for Event7?4N/A
PX830101_SCDPainTwelveMonths_City_Event7PX830101022800In the past twelve months, what city was the hospital (Event7) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event7PX830101022900In the past twelve months, what state was the hospital (Event7) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event8PX830101023000In the past twelve months, what was the date of Event8?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event8PX830101023100In the past twelve months, which hospital did you go for Event8?4N/A
PX830101_SCDPainTwelveMonths_City_Event8PX830101023200In the past twelve months, what city was the hospital (Event8) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event8PX830101023300In the past twelve months, what state was the hospital (Event8) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event9PX830101023400In the past twelve months, what was the date of Event9?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event9PX830101023500In the past twelve months, which hospital did you go for Event9?4N/A
PX830101_SCDPainTwelveMonths_City_Event9PX830101023600In the past twelve months, what city was the hospital (Event9) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event9PX830101023700In the past twelve months, what state was the hospital (Event9) in?4N/A
PX830101_SCDPainTwelveMonths_Date_Event10PX830101023800In the past twelve months, what was the date of Event10?4N/A
PX830101_SCDPainTwelveMonths_Hospital_Event10PX830101023900In the past twelve months, which hospital did you go for Event10?4N/A
PX830101_SCDPainTwelveMonths_City_Event10PX830101024000In the past twelve months, what city was the hospital (Event10) in?4N/A
PX830101_SCDPainTwelveMonths_State_Event10PX830101024100In the past twelve months, what state was the hospital (Event10) in?4N/A
PX830101_SCDPainSixMonths_SeverityPX830101030100In 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?4N/A
PX830101_SCDPainSixMonths_NumberPX830101030200How many episodes?4N/A
PX830101_SCDPainSixMonths_DaysPX830101030300How many days were missed?4N/A