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

Form Structure: Neuro-QoL Stigma Long Form

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

Title:

Neuro-QoL Stigma Long Form

Short Name:

NeuroQoLStigmaLF

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:

2016-12-28

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

Stigma LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Stigma illness recent assessment scale	The scale representing how often the participant was avoided by some people because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmaIllnessRcntAssessmtScl	Recommended	CDE
2	Quality of Life - Stigma illness left out event recent assessment scale	The scale representing how often the participant felt left out of things because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmaIlnssLftOutEvntRcntScl	Recommended	CDE
3	Quality of Life - Stigma illness avoid visual contact recent assessment scale	The scale representing how often people avoided looking at the participant because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmaIllnssAvodCntctRcntScl	Recommended	CDE
4	Quality of Life - Stigma illness embarassment recent assessment scale	The scale representing how often the participant felt embarassed about their illness lately, as part of Neuro-QOL Stigma.	QoLStgmaIllnssEmbrssmtRcntScl	Recommended	CDE
5	Quality of Life - Stigma illness uncomfortable other people recent assessment scale	The scale representing how often some people seemed uncomfortable with the participant because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssUncmftblPplRcntScl	Recommended	CDE
6	Quality of Life - Stigma illness physical limit embarassment recent assessmen scale	The scale representing how often the participant felt embarassed because of their physical limitations lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssPhyclLmtRcntScl	Recommended	CDE
7	Quality of Life - Stigma illness unkind treatment recent assessment scale	The scale representing how often people were unkind to the participant because of their illness lately, as part of Neuro-QOL Stigma.	QoLStigmIllnssUnkndTreatmntScl	Recommended	CDE
8	Quality of Life - Stigma illness blame recent assessment scale	The scale representing how often some people acted as though it was the participant's own fault they have this illness lately, as part of Neuro-QOL Stigma.	QoLStigmaIllnssBlameRecentScl	Recommended	CDE
9	Quality of Life - Stigma illness emotional distance recent assessment scale	The scale representing how often the participant felt emotionally stable lately, as part of Neuro-QOL Stigma.	QoLStigmIllnssEmotnlDstRcntScl	Recommended	CDE
10	Quality of Life - Stigma illness ridicule recent assessment scale	The scale representing how often people made fun of the participant because of their illness lately, as part of Neuro-QOL Stigma.	QoLStigmIllnssRidiculeRcntScl	Recommended	CDE
11	Quality of Life - Stigma illness social situation embarassment recent assessment scale	The scale representing how often the participant felt embarassed in social situations because of their illness lately, as part of Neuro-QOL Stigma.	QoLStigmIlnssSocSituEmbRcntScl	Recommended	CDE
12	Quality of Life - Stigma illness stranger stare recent assessment scale	The scale representing how often strangers tended to stare at the participant because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssStrngStareRcntScl	Recommended	CDE
13	Quality of Life - Stigma illness other people attitude worry recent assessment scale	The scale representing how often the participant worried about other people's attitudes towards him/her lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssOthPplAttidRcntScl	Recommended	CDE
14	Quality of Life - Stigma illness unfair treatment recent assessment scale	The scale representing how often the participant was treated unfairly by others because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIllnssUnfrTrtmntRcntScl	Recommended	CDE
15	Quality of Life - Stigma illness affect appearance unhappiness recent assessment scale	The scale representing how often the participant was unhappy about the way their illness affected their appearance lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssApprncUnhpyRcntScl	Recommended	CDE
16	Quality of Life - Stigma illness difficult maintain cleanliness recent assessment scale	The scale representing how often it was hard for the participatn to stay neat and clean because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssDifMaintClnRcntScl	Recommended	CDE
17	Quality of Life - Stigma illness people ignore good input recent assessment scale	The scale representing how often people tended to ignore the participant's good points because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssPplIgnrInptRcntScl	Recommended	CDE
18	Quality of Life - Stigma illness burden worry recent assessment scale	The scale representing how often the participant worried that he/she was a burden to others because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssBrndnWrryRcntScl	Recommended	CDE
19	Quality of Life - Stigma illness speech embarassment recent assessment scale	The scale representing how often the participant felt embarassed about their speech lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssSpchEmbrsmntRctScl	Recommended	CDE
20	Quality of Life - Stigma illness different feel compare other people recent assessment scale	The scale representing how often the participant felt different from others because of their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssFeelCmprPplRcntScl	Recommended	CDE
21	Quality of Life - Stigma illness blame self problem recent assessment scale	The scale representing how often the participant tended to blame himself/herself for their problems lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssBlamSlfProbRcntScl	Recommended	CDE
22	Quality of Life - Stigma illness new friend avoidance recent assessment scale	The scale representing how often the participant avoided making new friends to avoid telling others about their illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssNewFrndAvdRcntScl	Recommended	CDE
23	Quality of Life - Stigma illness other people lost job recent assessment scale	The scale representing how often people with the participant's illness lost their jobs when their employers found out about it lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssOthPplLstJbRcntScl	Recommended	CDE
24	Quality of Life - Stigma illness lost friend recent assessment scale	The scale representing how often the participant lost friends by telling them that they have this illness lately, as part of Neuro-QOL Stigma.	QoLStgmIlnssLostFriendRcntScl	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) - 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

Keywords

Change History