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Protocol - Frequency of Sickle Cell Pain Episodes Per Year

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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:

Availability:

Publicly available

Personnel and Training Required

None

Equipment Needs

None

Requirements
Requirement CategoryRequired
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
StandardNameIDSource
Common Data Elements (CDE) Sickle Cell Disease Pain Episode Frequency Assessment Text 4924414 CDE Browser
Human Phenotype Ontology Sickle Cell Anemia OMIM:603903 HPO
Human Phenotype Ontology Sickle Cell HP:0100749 HPO
Derived Variables

None

Process and Review

Not applicable.

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 IDVariable DescriptiondbGaP Mapping
PX830101_SCDPainSixMonths
PX830101010100 In the last 6 months, how many times did you more
visit an emergency room because of a sickle cell painful event? show less
N/A
PX830101_SCDPainSixMonths_City_Event1
PX830101010400 In the past six months, what city was the more
hospital (Event1) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event10
PX830101014000 In the past six months, what city was the more
hospital (Event10) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event2
PX830101010800 In the past six months, what city was the more
hospital (Event2) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event3
PX830101011200 In the past six months, what city was the more
hospital (Event3) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event4
PX830101011600 In the past six months, what city was the more
hospital (Event4) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event5
PX830101012000 In the past six months, what city was the more
hospital (Event5) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event6
PX830101012400 In the past six months, what city was the more
hospital (Event6) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event7
PX830101012800 In the past six months, what city was the more
hospital (Event7) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event8
PX830101013200 In the past six months, what city was the more
hospital (Event8) in? show less
N/A
PX830101_SCDPainSixMonths_City_Event9
PX830101013600 In the past six months, what city was the more
hospital (Event9) in? show less
N/A
PX830101_SCDPainSixMonths_Date_Event1
PX830101010200 In the past six months, what was the date of more
Event1? show less
N/A
PX830101_SCDPainSixMonths_Date_Event10
PX830101013800 In the past six months, what was the date of more
Event10? show less
N/A
PX830101_SCDPainSixMonths_Date_Event2
PX830101010600 In the past six months, what was the date of more
Event2? show less
N/A
PX830101_SCDPainSixMonths_Date_Event3
PX830101011000 In the past six months, what was the date of more
Event3? show less
N/A
PX830101_SCDPainSixMonths_Date_Event4
PX830101011400 In the past six months, what was the date of more
Event4? show less
N/A
PX830101_SCDPainSixMonths_Date_Event5
PX830101011800 In the past six months, what was the date of more
Event5? show less
N/A
PX830101_SCDPainSixMonths_Date_Event6
PX830101012200 In the past six months, what was the date of more
Event6? show less
N/A
PX830101_SCDPainSixMonths_Date_Event7
PX830101012600 In the past six months, what was the date of more
Event7? show less
N/A
PX830101_SCDPainSixMonths_Date_Event8
PX830101013000 In the past six months, what was the date of more
Event8? show less
N/A
PX830101_SCDPainSixMonths_Date_Event9
PX830101013400 In the past six months, what was the date of more
Event9? show less
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
you go for Event1? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event10
PX830101013900 In the past six months, which hospital did more
you go for Event10? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event2
PX830101010700 In the past six months, which hospital did more
you go for Event2? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event3
PX830101011100 In the past six months, which hospital did more
you go for Event3? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event4
PX830101011500 In the past six months, which hospital did more
you go for Event4? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event5
PX830101011900 In the past six months, which hospital did more
you go for Event5? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event6
PX830101012300 In the past six months, which hospital did more
you go for Event6? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event7
PX830101012700 In the past six months, which hospital did more
you go for Event7? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event8
PX830101013100 In the past six months, which hospital did more
you go for Event8? show less
N/A
PX830101_SCDPainSixMonths_Hospital_Event9
PX830101013500 In the past six months, which hospital did more
you go for Event9? show less
N/A
PX830101_SCDPainSixMonths_Number
PX830101030200 How many episodes? N/A
PX830101_SCDPainSixMonths_Severity
PX830101030100 In the last 6 months, have you had a painful more
episode severe enough to keep you from doing the usual daily activities, but without being seen by a doctor? show less
N/A
PX830101_SCDPainSixMonths_State_Event1
PX830101010500 In the past six months, what state was the more
hospital (Event1) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event10
PX830101014100 In the past six months, what state was the more
hospital (Event10) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event2
PX830101010900 In the past six months, what state was the more
hospital (Event2) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event3
PX830101011300 In the past six months, what state was the more
hospital (Event3) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event4
PX830101011700 In the past six months, what state was the more
hospital (Event4) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event5
PX830101012100 In the past six months, what state was the more
hospital (Event5) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event6
PX830101012500 In the past six months, what state was the more
hospital (Event6) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event7
PX830101012900 In the past six months, what state was the more
hospital (Event7) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event8
PX830101013300 In the past six months, what state was the more
hospital (Event8) in? show less
N/A
PX830101_SCDPainSixMonths_State_Event9
PX830101013700 In the past six months, what state was the more
hospital (Event9) in? show less
N/A
PX830101_SCDPainTwelveMonths
PX830101020100 In the last 12 months, how many times did more
you visit an emergency room because of a sickle cell painful event? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event1
PX830101020400 In the past twelve months, what city was the more
hospital (Event1) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event10
PX830101024000 In the past twelve months, what city was the more
hospital (Event10) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event2
PX830101020800 In the past twelve months, what city was the more
hospital (Event2) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event3
PX830101021200 In the past twelve months, what city was the more
hospital (Event3) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event4
PX830101021600 In the past twelve months, what city was the more
hospital (Event4) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event5
PX830101022000 In the past twelve months, what city was the more
hospital (Event5) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event6
PX830101022400 In the past twelve months, what city was the more
hospital (Event6) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event7
PX830101022800 In the past twelve months, what city was the more
hospital (Event7) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event8
PX830101023200 In the past twelve months, what city was the more
hospital (Event8) in? show less
N/A
PX830101_SCDPainTwelveMonths_City_Event9
PX830101023600 In the past twelve months, what city was the more
hospital (Event9) in? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event1
PX830101020200 In the past twelve months, what was the date more
of Event1? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event10
PX830101023800 In the past twelve months, what was the date more
of Event10? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event2
PX830101020600 In the past twelve months, what was the date more
of Event2? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event3
PX830101021000 In the past twelve months, what was the date more
of Event3? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event4
PX830101021400 In the past twelve months, what was the date more
of Event4? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event5
PX830101021800 In the past twelve months, what was the date more
of Event5? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event6
PX830101022200 In the past twelve months, what was the date more
of Event6? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event7
PX830101022600 In the past twelve months, what was the date more
of Event7? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event8
PX830101023000 In the past twelve months, what was the date more
of Event8? show less
N/A
PX830101_SCDPainTwelveMonths_Date_Event9
PX830101023400 In the past twelve months, what was the date more
of Event9? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event1
PX830101020300 In the past twelve months, which hospital more
did you go for Event1? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event10
PX830101023900 In the past twelve months, which hospital more
did you go for Event10? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event2
PX830101020700 In the past twelve months, which hospital more
did you go for Event2? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event3
PX830101021100 In the past twelve months, which hospital more
did you go for Event3? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event4
PX830101021500 In the past twelve months, which hospital more
did you go for Event4? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event5
PX830101021900 In the past twelve months, which hospital more
did you go for Event5? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event6
PX830101022300 In the past twelve months, which hospital more
did you go for Event6? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event7
PX830101022700 In the past twelve months, which hospital more
did you go for Event7? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event8
PX830101023100 In the past twelve months, which hospital more
did you go for Event8? show less
N/A
PX830101_SCDPainTwelveMonths_Hospital_Event9
PX830101023500 In the past twelve months, which hospital more
did you go for Event9? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event1
PX830101020500 In the past twelve months, what state was more
the hospital (Event1) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event10
PX830101024100 In the past twelve months, what state was more
the hospital (Event10) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event2
PX830101020900 In the past twelve months, what state was more
the hospital (Event2) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event3
PX830101021300 In the past twelve months, what state was more
the hospital (Event3) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event4
PX830101021700 In the past twelve months, what state was more
the hospital (Event4) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event5
PX830101022100 In the past twelve months, what state was more
the hospital (Event5) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event6
PX830101022500 In the past twelve months, what state was more
the hospital (Event6) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event7
PX830101022900 In the past twelve months, what state was more
the hospital (Event7) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event8
PX830101023300 In the past twelve months, what state was more
the hospital (Event8) in? show less
N/A
PX830101_SCDPainTwelveMonths_State_Event9
PX830101023700 In the past twelve months, what state was more
the hospital (Event9) in? show less
N/A
Sickle Cell Disease
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