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Form Structure: Neuro-QoL Item Bank v2.0-Cognitive Function-Long Form

This form structure is an organized set of data definitions for a copyrighted form
Resource:
FITBIR
Title:
Neuro-QoL Item Bank v2.0-Cognitive Function-Long Form
Short Name:
NeuroQoLCogLF
Description:
Neuro-QoL Item Bank v2.0-Cognitive Function-Long Form Copyright 2008-2013 David Cella and the PROMIS Health Organization on behalf of the National Institute for Neurological Disorders and Stroke (NINDS)
Disease:
General (For all diseases) Traumatic Brain Injury
Organization:
FITBIR
Required Program Form:
No
Standardization:
Standard NINDS CDE
Labels:
Form Type:
Clinical Assessment
Publication Date:
2022-08-12
Version:
1.0
Date Created:
2016-11-28
Owner:
Number of Data Elements:
51
eForms:
N
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
7 Assessment completion status  Status of completion of an assessment, such as a case report from (CRF), instrument, scale, computer assessment, etc. AssessmentCompletionStat Recommended CDE
8 Assessment completion status text  A free text related to Assessment completion status specifying completion details. This data element should be used along with AssessmenttCompletionStat to further describe the status of assessment completion AssessmentCompletionStatTxt 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

Cognitive Function LF (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Quality of Life - Keep track time difficulty scale  The scale which represents the amount of difficulty the participant currently has in keeping track of time (e.g., using a clock), as part of Neuro-QOL Cognitive Function. QoLKeepTrackTimeDifficultyScl Recommended CDE
2 Quality of Life - Check financial document accuracy difficulty scale  The scale which represents the amount of difficulty the participant currently has in checking the accuracy of financial documents (e.g., bills, checkbook, or bank statements), as part of Neuro-QOL Cognitive Function. QoLCheckFinanclDocAccurcyScl Recommended CDE
3 Quality of Life - Read follow complex instruction difficulty scale  The scale which represents the amount of difficulty the participant currently has in reading and following complex instructions (e.g., directions for a new medication), as part of Neuro-QOL Cognitive Function. QoLReadComplexInstrDifficltScl Recommended CDE
4 Quality of Life - Plan keep appointment not weekly routine difficulty scale  The scale which represents the amount of difficulty the participant currently has in planning for and keeping appointments that are not part of their weekly routine, as part of TBI-Quality of Life (TBI-QOL) and Neuro-QOL batteries. QoLPlanKeepAppmntNtWklyRtneScl Recommended CDE
5 Quality of Life - Manage time daily activity difficulty scale  The scale which represents the amount of difficulty the participant currently has in managing their time to do most of their daily activities, as part of TBI-Quality of Life (TBI-QOL) and Neuro-QOL batteries. QoLManagTmeDlyActvityDiffScl Recommended CDE
6 Quality of Life - Plan activity ahead time difficulty scale  The scale which represents the amount of difficulty the participant currently has in planning an activity several days in advance (e.g., a meal, trip, or visit to friends), as part of Neuro-QOL Cognitive Function. QoLPlanActvityAheadTimeDiffScl Recommended CDE
7 Quality of Life - Organize difficulty scale  The scale which represents the amount of difficulty the participant currently has in getting things organized, as part of TBI-Quality of Life (TBI-QOL) and Neuro-QOL batteries. QoLOrganizeDiffScl Recommended CDE
8 Quality of Life - Remember object location difficulty scale  The scale which represents the amount of difficulty the participant currently has in remembering where things were placed or put away (e.g., keys), as part of Neuro-QOL Cognitive Function. QoLRemembrObjctLocationDiffScl Recommended CDE
9 Quality of Life - Remember errand not written difficulty scale  The scale which represents the amount of difficulty the participant currently has in remembering a list of 4 to 5 errands without writing it down, as part of Neuro-QOL Cognitive Function. QoLRemembrErrndNotWrttnDiffScl Recommended CDE
10 Quality of Life - Learn new task difficulty scale  The scale which represents the amount of difficulty the participant currently has in learning new tasks or instructions, as part of TBI-Quality of Life (TBI-QOL) and Neuro-QOL batteries. QoLLearnNewTaskDiffScl Recommended CDE
11 Quality of Life - Simple mistake more easily past week scale  The scale representing how often the participant made simple mistakes more easily in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLSimpleMistakeMoreEasilyScl Recommended CDE
12 Quality of Life - Almost remember word past week scale  The scale representing how often words the participant wanted to use seemed to be on the "tip of their tongue" in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLAlmostRememberWordScl Recommended CDE
13 Quality of Life - Several repeat read past week scale  The scale representing how often the participant had to read something several times to understand it in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLSeveralRptReadScl Recommended CDE
14 Quality of Life - Trouble keep track interrupt scale  The scale representing how often the participant had trouble keeping track of what they were doing if they were interrupted, as part of Neuro-QOL Cognitive Function and TBI-QOL Cognition: General Concerns � Short Form 10a QoLTrbleKeepTrackInteruptScl Recommended CDE
15 Quality of Life - Multitask difficulty past week scale  The scale representing how often the participant had difficulty doing more than one thing at a time in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLMultitaskDifficultyScl Recommended CDE
16 Quality of Life - Task memory trouble past week scale  The scale representing how often the participant had trouble remembering whether they did things they were supposed to do, like taking a medicine or buying something they needed, in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLTaskMemoryTroubleScl Recommended CDE
17 Quality of Life - Trouble remembering new information past week scale  The scale representing how often the participant had trouble remembering new information, like phone numbers of simple instructions, in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLTrbleRememberingNewInfoScl Recommended CDE
18 Quality of Life - Room Walked into room and forgot why past week scale  The scale representing how often the participant walked into a room and forgot what they meant to do or get there in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLWalkedIntoRoomForgotWhyScl Recommended CDE
19 Quality of Life - Familiar person name remember difficulty past week scale  The scale representing how often the participant had trouble remembering the name of a familiar person in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLFamiliarNameRememberDiffScl Recommended CDE
20 Quality of Life - Clear thought difficulty past week scale  The scale representing how often the participant had trouble thinking clearly in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLClearThoughtDifficultyScl Recommended CDE
21 Quality of Life - Reaction slow past week scale  The scale representing how often the participant reacted slowly to things that were said and done in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLReactionSlowScl Recommended CDE
22 Quality of Life - Thought formation trouble past week scale  The scale representing how often the participant had trouble forming thoughts in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLThoughtFormationTroubleScl Recommended CDE
23 Quality of Life - Thought process slow past week scale  The scale representing how often the participant's thinking was slow in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLThoughtProcessSlowScl Recommended CDE
24 Quality of Life - Attention difficulty past week scale  The scale representing how often the participant had to work really hard to pay attention or they would make a mistake in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLAttentionDifficultyScl Recommended CDE
25 Quality of Life - Trouble concentrate scale  The scale representing how often the participant had trouble concentrating, as part of Neuro-QOL Cognitive Function. And as part of Traumatic Brain Injury-Quality of Life (TBI-QOL) Cognition: General Concerns � Short Form 10a QoLTroubleConcentrateScl Recommended CDE
26 Quality of Life - Trouble start simple task past week scale  The scale representing how often the participant had trouble getting started on very simple tasks in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLTroubleStartSimpleTaskScl Recommended CDE
27 Quality of Life - Trouble make decision past week scale  The scale representing how often the participant had trouble making decisions in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLTroubleMakeDecisionScl Recommended CDE
28 Quality of Life - Trouble plan task step past week scale  The scale representing how often the participant had trouble planning out steps of a task in the past 7 days, as part of Neuro-QOL Cognitive Function. QoLTroublePlanTaskStepScl 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) - 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
4 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
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