Form Structure: Neuro-QoL Positive Affect and Well Being Long Form : FITBIR : Federal Interagency Traumatic Brain Injury Research Informatics System

Form Structure: Neuro-QoL Positive Affect and Well Being Long Form

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

Title:

Neuro-QoL Positive Affect and Well Being Long Form

Short Name:

NeuroQoLPstvAffctWellBngLF

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

Positive Affect and Well Being LF (Appears Up To 1 Time)

#	Title	Short Description	Variable Name	Required?	Type
1	Quality of Life - Satisfaction well being recent asssement scale	The scale representing how often the participant had a sense of well-being lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLSatisfWellBngRcntAssmntScl	Recommended	CDE
2	Quality of Life - Satisfaction hopeful recent assessment scale	The scale representing how often the participant felt hopeful lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLSatisfHopfulRcntAssmntScl	Recommended	CDE
3	Quality of Life - Satisfication general life recent assessment scale	The scale representing how often the participant felt their life was satisfying lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLSatisfGenLifRcntAssmntScl	Recommended	CDE
4	Quality of Life - Satisfaction life purpose recent assessment scale	The scale representing how often the participant felt their life had purpose lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfePurpsRcntAssmtScl	Recommended	CDE
5	Quality of Life - Satisfaction life significance recent assessment scale	The scale representing how often the participant felt their life had meaning lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfeSgnfRcntAssmntScl	Recommended	CDE
6	Quality of Life - Satisfaction cheerful recent assessment scale	The scale representing how often the participant felt cheerful lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnCheerflRcntAssmntScl	Recommended	CDE
7	Quality of Life - Satisfaction life functional recent assessment scale	The scale representing how often the participant felt their life was worth living lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfcnLfeFunctRcntAssmntScl	Recommended	CDE
8	Quality of Life - Satisfaction life balance sense recent assessment scale	The scale representing how often the participant had a sense of balance in their life lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfeBlncRcntAssmntScl	Recommended	CDE
9	Quality of Life - Satisfaction life many area interest recent assessment scale	The scale representing how often the participant was interested in many areas of their life lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfeAreaRcntAssmntScl	Recommended	CDE
10	Quality of Life - Satisfaction life enjoyment ability recent assessment scale	The scale representing how often the participant was able to enjoy life lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfeEnjyRcntAssmntScl	Recommended	CDE
11	Quality of Life - Satisfaction life purpose recent assesment scale	The scale representing how often the participant felt a sense of purpose in their life lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLfePurpRcntAssmntScl	Recommended	CDE
12	Quality of Life - Satisfaction laugh humor recent assessment scale	The scale representing how often the participant could laugh and see the humor in situations lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLghHmrRcntAssmntScl	Recommended	CDE
13	Quality of Life - Satisfaction relax recent assessment scale	The scale representing how often the participant was able to be at ease and feel relaxed lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnRelaxRecntAssmntScl	Recommended	CDE
14	Quality of Life - Satisfaction future event interest recent assessment scale	The scale representing how often the participant looked forward with enjoyment to upcoming events lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfcnFutrEvntRcntAssmntScl	Recommended	CDE
15	Quality of Life - Satisfaction emotion stable recent assessment scale	The scale representing how often the participant felt emotionally stable lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnEmtnStblRcntAssmtScl	Recommended	CDE
16	Quality of Life - Satisfaction lovable recent assessment scale	The scale representing how often the participant felt lovable lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLovbleRecntAssmntScl	Recommended	CDE
17	Quality of Life - Satisfaction confident recent assessment scale	The scale representing how often the participant felt confident lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLSatisfConfdntRecntAssmntScl	Recommended	CDE
18	Quality of Life - Satisfaction good life recent assessment scale	The scale representing how often the participant had a good life, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnGoodLfeRcntAssmntScl	Recommended	CDE
19	Quality of Life - Satisfaction peaceful life recent assessment scale	The scale representing how often the participant felt their life was peaceful lately, as par of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnPeacLfeRcntAssmntScl	Recommended	CDE
20	Quality of Life - Satisfaction live life fully recent assessment scale	The scale representing how often the participant felt they were living life to the fullest lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnLivFullRcntAssmntScl	Recommended	CDE
21	Quality of Life - Satisfaction close ideal life recent assessment scale	The scale representing how often the participant felt in most ways their life was close to their ideal lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnIdlLfeRcntAssmntScl	Recommended	CDE
22	Quality of Life - Satisfaction good thought control recent assessment scale	The scale representing how often the participant had good control of their thoughts lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnGoodThouRcntAssmtScl	Recommended	CDE
23	Quality of Life - Satisfaction hope during bad episode recent assessment scale	The scale representing how often the participant still had hope even when things were going badly lately, as part of Neuro-QOL Positive Affect and Well-Being.	QoLStsfctnBadEpsdRcntAssmntScl	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