Form Structure: Pediatric Quality of Life Inventory (PedsQL) Family Information Form
This form structure is an organized set of data definitions for a copyrighted form
Title:
Pediatric Quality of Life Inventory (PedsQL) Family Information Form
Short Name:
PedsQLFamInfForm
Description:
The PedsQL Family Information Form, completed by parents, contains demographic information on the child and parents, including the childs date of birth, gender, race/ethnicity, and parental education information and whether the child has a chronic health condition. It also asks for information on the number of days during the past 30 days that the child needed care or missed school because of health, the number of days the parent missed work because of the child's health, and the impact of the child's health on the parent's daily work routine and ability to concentrate at work. The PedsQL Family Information Form contains the demographic information required to calculate the Hollingshead socioeconomic status (SES) index (Hollingshead, 1975). Copyright 1998 JW Varni, PhD. All rights reserved. Varni, James W., Michael Seid, and Paul S. Kurtin. Pediatric health-related quality of life measurement technology: A guide for health care decision makers. JCOM-WAYNE PA- 6 (1999): 33-44.
Disease:
Traumatic Brain Injury
General (For all diseases)
Organization:
NIH/CIT/BRICS
Required Program Form:
No
Standardization:
Standard NINDS CDE
Labels:
Form Type:
Clinical Assessment
Version:
1.0
Date Created:
2016-11-07
Owner:
Number of Data Elements:
30
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 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 Family Information Form Impact Scale (Appears Up To 1 Time)
| # | Title | Short Description | Variable Name | Required? | Type |
|---|---|---|---|---|---|
| 1 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Relationship child type | The type of the family member's relationship to the child, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFRelationshipChildTyp | Recommended | CDE |
| 2 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale chronic health condition indicator | Indicates whether or not the child has had a chronic health condition in the last 6 months, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form.. | PedsQLFIFImSclChrncHlthCndInd | Recommended | CDE |
| 3 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale chronic health condition text | The free-text field to capture the name of the chronic health condition, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclChrncHlthCndTxt | Recommended | CDE |
| 4 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale overnight hospital visit indicator | Indicates an overnight visit to the hospital, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclOvnHospVisitInd | Recommended | CDE |
| 5 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale overnight hospital visit count | Count of how many overnight hospital visits, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclOvnHospVisitCt | Recommended | CDE |
| 6 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale overnight hospital visit text | The free-text field to capture the name of the illness that caused overnight hospital visit, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclOvnHospVisitTxt | Recommended | CDE |
| 7 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale emergency room urgent care visit indicator | Indicates whether or not the child visited the emergency room or urgent care, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclERUrCaVisitInd | Recommended | CDE |
| 8 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale emergency room urgent care visit count | Count of how many time the child visited the emergency room/urgent care facility, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclERUrCaVisitCt | Recommended | CDE |
| 9 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale emergency room urgent care visit text | Text to describe what was wrong with the child when he or she visted the emergency room/urgent care facility, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImSclERUrCaVisitTxt | Recommended | CDE |
| 10 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale miss school count | Count of the number of days the child had to miss school because of a physical injury/ailment, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImScMissSchoolCt | Recommended | CDE |
| 11 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale sick bed count | Count of how many days the child was sick in bed, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImScSickBedCt | Recommended | CDE |
| 12 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Impact scale child care count | Count of the number of days the child had to have someone take care of him or her due to a physical or mental health problem, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFImScChildCareCt | Recommended | CDE |
| 13 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Missed work count | Count of the number of days the parent has missed work due to his or her child's illness, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFMissedWorkCt | Recommended | CDE |
| 14 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Chid health interfered work scale | Scale of how often the child's health has interfered with the parent's daily routine at work, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFChldHlthInterfWrkScl | Recommended | CDE |
| 15 | Pediatric Quality of Life Inventory (PedsQL) Family Information Form - Child health interfered concentration scale | Scale of how often the child's illness has affected the parent's ability to concentrate on work, as a part of the Pediatric Quality of Life Inventory (PedsQL) Family Information Form. | PedsQLFIFChldHlthIntrCntrtnScl | Recommended | CDE |
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