Form Structure: Neuro-QoL Pediatric Fatigue Long Form
This form structure is an organized set of data definitions for a copyrighted form
Resource:
FITBIR
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:
General (For all diseases)
Traumatic Brain Injury
Organization:
FITBIR
Required Program Form:
No
Standardization:
Standard NINDS CDE
Labels:
Form Type:
Clinical Assessment
Version:
1.0
Date Created:
2016-12-29
Owner:
Number of Data Elements:
32
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.
Form Administration (Appears 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 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 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 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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