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Form Structure: Pediatric Quality of Life Inventory(PedsQL) Family Impact Module

This form structure is an organized set of data definitions for a copyrighted form
Title:
Pediatric Quality of Life Inventory(PedsQL) Family Impact Module
Short Name:
PedsQLFamImpMod
Description:
The PedsQL 4.0 Measurement Model is a modular approach to measuring health-related quality of life (HRQOL) in healthy children and adolescents and those with acute and chronic health conditions. The Parent report of the PedsQL Family Impact Module is composed of 36 items comprising 8 dimensions. opyright 1998 JW Varni, PhD. All rights reserved. Varni JW, Seid M, Kurtin PD. PedsQL 4.0: Reliability and validity of the pediatric quality of life inventory Version 4.0 generic core scales in healthy and patient populations. Medical Care. 2001; 38(8): 800-12.
Disease:
General (For all diseases) Traumatic Brain Injury
Organization:
NIH/CIT/BRICS
Required Program Form:
No
Standardization:
Standard NINDS CDE
Labels:
Form Type:
Clinical Assessment
Version:
1.0
Date Created:
2016-11-02
Owner:
Number of Data Elements:
54
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

PedsQL Physical Functioning (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning tired day scale  Scale of how often the parent feels tired during the day, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngTiredDayScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning morning awake tired scale  Scale of how often the parent feels tired when he or she wakes up in the morning, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngMrnAwkScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning tired like scale  Scale of how often the parent feels too tired to do the things he or she likes to do, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngTiredLkScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning headache scale  Scale of how often the parent gets headaches, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngHeadacheScl Recommended CDE
5 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning physically weak scale  Scale of how often the parent feels physically weak, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngPhysWeakScl Recommended CDE
6 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Physical functioning sick stomach scale  Scale of how often the parent feels sick to his or her stomach, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPhysFnctngSckStmchScl Recommended CDE

PedsQL FIM Emotional Functioning (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Emotional functioning anxious scale  Scale of how often the parent feels anxious, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMEmoFnctngAnxiousScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Emotional functioning sad scale  Scale of how often the parent feels sad, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMEmoFnctngSadScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Emotional functioning angry scale  Scale of how often the parent feels angry, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMEmoFnctngAngryScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Emotional functioning frustrated scale  Scale of how often the parent feels frustrated, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMEmoFnctngFrstrtdScl Recommended CDE
5 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Emotional functioning helpless hopeless scale  Scale of how often the parent feels helpless or hopeless, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMEmoFnctngHlplsHplsScl Recommended CDE

PedsQL FIM Social Functioning (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Social functioning isolated others scale  Scale of how often the parent feel isolated from others, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMSocFnctngIsoltdOthScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Social functioning trouble getting support scale  Scale of how often the parent has trouble getting support from others, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMSocFnctngGtngSprtScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Social functioning hard finding time scale  Scale of how often the parent finds it hard to find time for social activities, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMSocFnctngHrdFndgTmScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Social functioning not enough energy scale  Scale of how often the parent does not have energy for social activities, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMSocFnctngNtEngEnrgScl Recommended CDE

PedsQL FIM Cognitive Functioning (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Cognitive functioning hard pay attention scale  Scale of how often the parent finds it hard to keep his or her attention on things, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCogFnctHrdPyAttnScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Cognitive functioning hard remember people tell me scale  Scale of how often the parent finds it hard to remember what people have just told them, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCogFnctHrdRmbPplTlScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Cognitive functioning hard remember heard scale  Scale of how often the parent finds it hard to remember what he or she just heard, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCogFnctHrdRmbrHrdScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Cognitive functioning hard think quick scale  Scale of how often the parent finds it hard to think quickly, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCogFnctHrdThnkQckScl Recommended CDE
5 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Cognitive functioning trouble remember thought scale  Scale of how often the parent has trouble remembering what he or she was just thinking, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module.. PedsQLFIMCogFnctTrbRmbrThgtScl Recommended CDE

PedsQL FIM Communication (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Communication other people not understand scale  Scale of how often the parent feels that others do not understand his families situation, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCommOthDntUndrstndScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Communication hard talk with other people scale  Scale of how often the parent finds it hard to talk about his or her child's health with others, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCommHrdTlkWthOthrScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Communication hard tell doctor scale  Scale of how often the parent finds it hard to tell doctors and nurses how he or she feels, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMCommHardTellDctrScl Recommended CDE

PedQL FIM Worry (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Worry treatment working scale  Scale of how often the parent worries about whether or not his or her child's medical treatments are working, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMWrryTrtmntWrkngScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Worry treatment side effect scale  Scale of how often the parent worries about the side effects of his or her child's medications/medical treatment, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMWrryTrtmntSidEffctScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Worry other people react scale  Scale of how often the parent worries about how others will react to his or her child's condition, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMWrryOtherPplReactScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Worry affecting family scale  Scale of how often the parent worries about how his or her child's illness is affecting other family members,as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMWrryAffctngFamilyScl Recommended CDE
5 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Worry child future scale  Scale of how often the parent worries about his or her child's future, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMWrryChildFutureScl Recommended CDE

PedsQL FIM Daily Activities (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Daily activity family activity more effort scale  Scale of how often family activities take more time and effort, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMDlyActvFmActvMrEffScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Daily activity difficulty finish household task scale  Scale of how often families have difficulty finding time to finish household tasks, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMDlyActvDfcltFnsTskScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Daily activity too tired to finish household task scale  Scale of how often the family feels too tired to finish household task, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMDlyActvTrdFnshTskScl Recommended CDE

PedsQL FIM Family Relationships (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family relations lack communication scale  Scale of how often the family lacks communication between family members, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFamRltnLckComnctnScl Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family relations family conflict scale  Scale of how often there are conflicts between family members, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFamRltnFamCnflctScl Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family relations difficulty make decision scale  Scare of how often the family has difficulties making decisions together as a family, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFamRltnDfctyMkDcsnScl Recommended CDE
4 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family relations difficulty solve problem scale  Scale of how often the family has difficulties solving family problems together, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFamRltnDifctSlvPrbScl Recommended CDE
5 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family relations family stress scale  Scale of how often the family experiences stress or tension between family members, as part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFmlyRltnStressScl Recommended CDE

PedsQL FIM Scoring (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Pediatric Quality of Life Inventory(PedsQL) - Total Score  Total Score as a part of Pediatric Quality of Life Inventory (PedsQL). PedsQLTtlScore Recommended CDE
2 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Parent HRQL Summary Score  Summary score for physical, emotional, social, and cognitive functioning scales, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMPrtHRQLSumScore Recommended CDE
3 Pediatric Quality of Life Inventory (PedsQL) Family Impact Module - Family Functioning Summary Score  Summary score for daily activities and family relationships scales, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Impact Module. PedsQLFIMFamilyFunctnSumScore Recommended CDE
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Change History