Form Structure: Pediatric Quality of Life Inventory(PedsQL) Family Impact Module : FITBIR : Federal Interagency Traumatic Brain Injury Research Informatics System

Resource:

FITBIR

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.

Collapse All Expand All

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

Keywords