Form Structure: Neuro-QoL Pediatric Pain Short Form : FITBIR : Federal Interagency Traumatic Brain Injury Research Informatics System

Form Structure: Neuro-QoL Pediatric Pain Short Form

This form structure is an organized set of data definitions for a copyrighted form

Resource:

FITBIR

Title:

Neuro-QoL Pediatric Pain Short Form

Short Name:

NeuroQolPedPainSF

Description:

Disease:

Traumatic Brain Injury General (For all diseases)

Organization:

FITBIR

Required Program Form:

Standardization:

Standard NINDS CDE

Labels:

Form Type:

Clinical Assessment

Version:

1.0

Date Created:

2016-12-28

Owner:

Number of Data Elements:

eForms:

Logically grouped data elements with defined frequency at which they repeat.

#	Title	Short Description	Variable Name	Required?	Type
1	GUID	Global Unique ID which uniquely identifies a subject	GUID	Required	CDE
2	Subject identifier number	An identification number assigned to the participant/subject within a given protocol or a study.	SubjectIDNum	Optional	CDE
3	Age in years	Value for participant's subject age recorded in years.	AgeYrs	Recommended	CDE
4	Vital status	Status of participant/subject as alive or dead	VitStatus	Optional	CDE
5	Visit date	Actual interview or visit date	VisitDate	Recommended	CDE
6	Site name	The name of the site for the study	SiteName	Recommended	CDE
7	Days since baseline	The number of days since baseline	DaysSinceBaseline	Optional	CDE
8	Case control indicator	Indicator of whether subject is in the case or control arm of the study.	CaseContrlInd	Optional	CDE
9	General notes text	General notes	GeneralNotesTxt	Optional	CDE

Additional Element Groups

Listed below are your additional element groups.

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Form Administration (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Language form administration ISO code	Code (ISO 639-2) for the language that was used for CRF/instrument/scale/etc. administration	LangCRFAdministratISOCode	Recommended	CDE
2	Language form administration ISO code other text	The free-text field related to 'Language used for CRF/instrument/scale/etc. administration ISO code' specifying other text.	LangCRFAdministratISOCodeOTH	Recommended	CDE
3	Context type	The context to which the questions were answered	ContextType	Recommended	CDE
4	Context type other text	The free-text related to ContextType specifying other text	ContextTypeOTH	Recommended	CDE
5	Data source	Source of the data provided on the case report form	DataSource	Recommended	CDE
6	Data source other text	The free-text field related to Data source specifying other text. Source of the data provided on the case report form	DataSourceOTH	Recommended	CDE

NeuroQoL Form Administration (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life in Neurological Disorders (Neuro-Qol) - Form administered status	The specific Neuro-Qol form administered status, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLFormStatus	Recommended	CDE

Pediatric Pain SF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Pain present high assessment scale	The scale representing how often the participant had lots of pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLPainPresentHighAssmtScl	Recommended	CDE
2	Quality of Life - Medicine needed assessment scale	The scale representing how often the participant's pain was so bad that he or she needed to take medicine for it in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLMedicineNeededAssmtScl	Recommended	CDE
3	Quality of Life - School missed assessment scale	The scale representing how often the participant missed school when he or she was in pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLSchoolMissedAssmtScl	Recommended	CDE
4	Quality of Life - Stop activity assessment scale	The scale representing how often the participant had so much pain that I had to stop what I was doing in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLStopActivityAssmtScl	Recommended	CDE
5	Quality of Life - Body pain assessment scale	The scale representing how often the participant hurt all over his or her body in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLBodyPainAssmtScl	Recommended	CDE
6	Quality of Life - Pain assessment scale	The scale representing how often the participant had pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLPainAssmtScl	Recommended	CDE
7	Quality of Life - Sleep difficulty assessment scale	The scale representing how often the participant had trouble sleeping when he or she had pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLSleepDifficltyAssmtScl	Recommended	CDE
8	Quality of Life - TV watching difficulty assessment scale	The scale representing how often the participant had trouble watching TV when he or she had pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLTvWatchingDifficltyAssmtScl	Recommended	CDE
9	Quality of Life - Play friend difficulty assessment scale	The scale representing how often the participant found it hard to play or hang out with his or her friends when he or she had pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLPlayFriendDffcltyAssmtScl	Recommended	CDE
10	Quality of Life - Pain length assessment scale	The scale representing how long the participant was in pain in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLPainLngthAssmtScl	Recommended	CDE

NeuroQol Scoring (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life in Neurological Disorders (Neuro-Qol) - Items completed count	The count of items on the Neuro-Qol form completed by the participant, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLItemCompletedCount	Recommended	CDE
2	Quality of Life in Neurological Disorders (Neuro-Qol) - Raw score	The participant's raw score on the Neuro-Qol form, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLRawScore	Recommended	CDE
3	Quality of Life in Neurological Disorders (Neuro-Qol) - Standard error	Standard error, as part of the Quality of Life in Neurological Disorders (Neuro-Qol)	QoLStandardError	Recommended	CDE
4	Quality of Life in Neurological Disorders (Neuro-Qol) - T-score value	The value of the T-score, a standardized score with a mean of 50 and a standard deviation (SD) of 10 representing the rescaled raw score, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).(PROMIS).	QoLTScore	Recommended	CDE
5	Quality of Life in Neurological Disorders (Neuro-Qol) - Theta value	Theta metric value reported from the CAT Neuro-Qol results, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLThetaVal	Recommended	CDE

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