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

 General Details

Title:
Neuro-QoL Pediatric Fatigue Long Form
Short Name:
NeuroQolPedFatigueLF
Description:
NeuroQoL Pediatric Fatigue. Copyright 2008-2013 David Cella and the PROMIS Health Organization on behalf of the National Institute for Neurological Disorders and Stroke (NINDS)
Disease:
Traumatic Brain Injury , General (For all diseases)
Organization:
FITBIR
Required Program Form:
No
Standardization:
Standard NINDS CDE
Labels:
Form Type:
Clinical Assessment
Version:
1.0
Date Created:
2016-12-28
Owner:
Number of Data Elements:
32
eForms:
N

 Documentation


 Groups & Attached Data Elements

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.

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 Fatigue LF (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Quality of Life- Tired fatigue assessment past week scale  The scale representing how often the participant felt tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLTrdFtigueAssmtPstWkScl Recommended CDE
2 Quality of Life- Trouble starting fatigue assessment past week scale  The scale representing how often the participant had trouble starting things because he or she was too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLTrbStrtngAssmtPstWkScl Recommended CDE
3 Quality of Life- Trouble finishing fatigue assessment past week scale  The scale representing how often the participant had trouble finishing things because he or she was too tired in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLTrbFnshngAssmtPstWKScl Recommended CDE
4 Quality of Life- Day sleep need fatigue assessment past week scale  The scale representing how often the participant needed to sleep during the day in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLNdDaySlpAssmtPstWkScl Recommended CDE
5 Quality of Life- Hard going out fatigue assessment past week scale  The scale representing how often the participant found that he or she being tired made it hard to play or go out with friends as much as he or she would have liked in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLHrdGngOtAssmtPstWkScl Recommended CDE
6 Quality of Life- Trouble eating fatigue assessment past week scale  The scale representing how often the participant was too tired to eat in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLTblEatingAssmtPstWkScl Recommended CDE
7 Quality of Life- Sad fatigue assessment past week scale  The scale representing how often the participant found that being tired made him or her sad in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLSadFtgAssmtPstWkScl Recommended CDE
8 Quality of Life- Mad fatigue assessment past week scale  The scale representing how often the participant found that being tired made him or her mad in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLMadFtgAssmtPstWkScl Recommended CDE
9 Quality of Life- Upset fatigue assessment past week scale  The scale representing how often the participant got upset by being too tired to do things he or she wanted to do in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLUpstFtgAssmtPstWKScl Recommended CDE
10 Quality of Life- Help need fatigue assessment past week scale  The scale representing how often the participant needed help doing his or her usual things at home in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLHlpNdFtgAssmtPstWkScl Recommended CDE
11 Quality of Life- Weak fatigue assessment past week scale  The scale representing how often the participant felt weak in the past 7 days, as part of the Quality of Life in Neurological Disorders (Neuro-Qol). QOLWeakFtgAssmtPstWkScl 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

 Change History

 Administrative Change History