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

Form Structure: Neuro-QoL Pediatric Anxiety Long Form

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

Resource:

FITBIR

Title:

Neuro-QoL Pediatric Anxiety Long Form

Short Name:

NeuroQoLPedAnxietyLF

Description:

Disease:

General (For all diseases) Traumatic Brain Injury

Organization:

FITBIR

Required Program Form:

Standardization:

Standard NINDS CDE

Labels:

Form Type:

Clinical Assessment

Version:

1.0

Date Created:

2016-12-23

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 Anxiety LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Afraid alone assessment past week scale	The scale representing how often the participant felt afraid to go out alone in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLAfrdAloneAssmtPstWkScl	Recommended	CDE
2	Quality of Life - Worry create friend difficulty assessment past week scale	The scale representing how often the participant found that being worried made it hard for him or her to be with his or her friends in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLFrdDfcltyAssmtPstWkScl	Recommended	CDE
3	Quality of Life - Worry schoolwork difficulty assessment past week scale	The scale representing how often the participant found it was hard to do schoolwork because I was nervous or worried in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLWrkDfcltyAssmtPstWkScl	Recommended	CDE
4	Quality of Life - Afraid assessment past week scale	The scale representing how often the participant felt afraid in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLAfraidAssmtPstWkScl	Recommended	CDE
5	Quality of Life - Worry home assessment past week scale	The scale representing how often the participant worried when he or she was at home in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLWrryHomeAssmtPstWkScl	Recommended	CDE
6	Quality of Life - Worry assessment past week scale	The scale representing how often the participant felt worried in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLWorryAssmtPstWkScl	Recommended	CDE
7	Quality of Life - Family away worry assessment past week scale	The scale representing how often the participant worried when he or she was away from his or her family in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLFamAwyWryAssmtPstWkScl	Recommended	CDE
8	Quality of Life - Scare easy assessment past week scale	The scale representing how often the participant got scared easily in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLScareEasyAssmtPstWkScl	Recommended	CDE
9	Quality of Life - Death worry assessment past week scale	The scale representing how often the participant was worried that he or she might die in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLDeathWryAssmtPstWkScl	Recommended	CDE
10	Quality of Life - Nervous assessment past week scale	The scale representing how often the participant felt nervous in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLNervousAssmtPstWkScl	Recommended	CDE
11	Quality of Life - Worry health assessment past week scale	The scale representing how often the participant worried that his or her health might get worse in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLWorryHlthAssmtPstWkScl	Recommended	CDE
12	Quality of Life - Worry school assessment past week scale	The scale representing how often the participant worried about doing well in school in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLWrySchoolAssmtPstWkScl	Recommended	CDE
13	Quality of Life - Hospital setting anxious past week scale	The scale representing how often the participant became anxious when he or she went back to the hospital or clinic in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLHospSttingAnxsPstWkScl	Recommended	CDE
14	Quality of Life - Health affect future assessment past week scale	The scale representing how often the participant worried about how his or her health would affect his or her future in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLHlthFutreAssmtPstWkScl	Recommended	CDE
15	Quality of Life - Significant other worry assessment past week scale	The scale representing how often the participant, because of his or her health, worried about having a boyfriend or a girlfriend in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLSigOthWryAssmtPstWkScl	Recommended	CDE
16	Quality of Life - Good job worry assessment past week scale	The scale representing how often the participant worried about getting a good job because of his or her medical condition in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLGoodJbWryAssmtPstWkScl	Recommended	CDE
17	Quality of Life - Nervous easy assessment past week scale	The scale representing how often the participant got nervous more easily than other people in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLNrvousEsyAssmtPstWkScl	Recommended	CDE
18	Quality of Life - College worry assessment past week scale	The scale representing how often the participant, because of his or her health worried about being able to go to college in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLCollegWryAssmtPstWkScl	Recommended	CDE
19	Quality of Life - Support self worry assessment past week scale	The scale representing how often the participant, because of his or her health, worried about getting a job to support him or herself in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QOLSptSlfWryAssmtPstWkScl	Recommended	CDE

NeuroQol Scores (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) - Long Form Raw score	The participant's raw score on the Neuro-Qol form, as part of the Quality of Life in Neurological Disorders (Neuro-Qol).	QoLLFRawScore	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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