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

 General Details

Title:
Neuro-QoL Satisfaction with Social Roles and Activities Long Form
Short Name:
NeuroQoLSfsnSRALF
Description:
NeuroQoL Satisfaction in Social Roles and Activities Long Form. 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:
2016-12-28
Owner:
Number of Data Elements:
66
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

Satisfaction in SRA LF (Appears Up To 1 Time)

# Title Short Description Variable Name Required? Type
1 Quality of Life - Family regular activity limitation bother past week scale  The scale which represents the extent to which the participant was bothered by their limitations in regular family activities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFamRegActvtyLimtnBotherScl Recommended CDE
2 Quality of Life - Friend need ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to meet the needs of their friends in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFriendNeedAbilityDisappScl Recommended CDE
3 Quality of Life - Family socialize ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to socialize with their family in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFamSoclizAbltyDisppntmntScl Recommended CDE
4 Quality of Life - Friend regular activity limitation bother past week scale  The scale which represents the extent to which the participant was bothered by limitations in their regular activities with friends in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFriendRegActivtyLimBothrScl Recommended CDE
5 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability to do things for fun outside of home past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do things for fun outside of the home in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyDoFunOutHomeScale Recommended CDE
6 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with amount of time spent doing leisure activities past week scale  The scale which represents the extent of the participant's satisfaction with the amount of time he spent doing leisure activities in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyLeisureTimeScale Recommended CDE
7 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with how much work could do past week scale  The scale which represents how often the participant's satisfaction with how much work he/she could do in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyHowMuchWorkScale Recommended CDE
8 Quality of Life - Household chore satisfaction ability past week scale  The scale which represents the extent to which the participant was satisfied with their ability to do household chores and tasks in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLHoushldChoreStsfctnAbltyScl Recommended CDE
9 Quality of Life - Socialize ability family disappointment past week scale  The scale which represents the extent to which the participant felt that their family was disappointed in their ability to socialize with them in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLScialzeAbltyFamDsppntmntScl Recommended CDE
10 Quality of Life - Family need disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to meet the needs of their family in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFamilyNeedDisappointmentScl Recommended CDE
11 Patient-Reported Outcome Measurement Information System (PROMIS) - feel good ability do thing for family past week scale  The scale which represents the extent to which the participant felt good about his ability to do things for his/her family in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISFltGoodAbiDoForFamScale Recommended CDE
12 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability meet needs those depend on self past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to meet the needs of those who depend on him in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiMeetNeedsScale Recommended CDE
13 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability do things for family past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do things for his family in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiDoForFamlyScale Recommended CDE
14 Quality of Life - Family member activity level satisfaction past week scale  The scale which represents the extent to which the participant was satisfied with their current level of activity with family members in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFamMembrActvtyLvlStsfctnScl Recommended CDE
15 Quality of Life - Socialize ability friend disappointment self-assessment past week scale  The scale which represents the extent to which the participant felt that their friends were disappointed in their ability to socialize with them in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLSocialzAbltyFrndDsppntmtScl Recommended CDE
16 Quality of Life - Friendship action ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to do things for their friends in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFrdshpActnAbltyDsppntmntScl Recommended CDE
17 Quality of Life - Friend socialize ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to socialize with their friends in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLFriendSoclzAbilityDisappScl Recommended CDE
18 Quality of Life - Social communication maintain ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to keep in touch with others in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLSoclCmmctnMaintDsppntmntScl Recommended CDE
19 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability to do things for friends past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do things for his friends in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyDoForFriendsScale Recommended CDE
20 Patient-Reported Outcome Measurement Information System (PROMIS) - happy how much do for friend past week scale  The scale which represents how often the participant was happy with how much he/she did for his friends in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISHpyHowMuchDidFrndsScale Recommended CDE
21 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with current level of activities with friends past week scale  The scale which represents the extent of the participant's satisfaction with his/her current level of activities with friends in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyLvlActWthFrndScale Recommended CDE
22 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with amount of time spent visiting friends past week scale  The scale which represents the extent of the participant's satisfaction with the amount of time spent visiting his/her friends in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyTimeVisitFrndScale Recommended CDE
23 Quality of Life - Community activity ability other people disappointment self-assessment past week scale  The scale which represents the extent to which the participant felt that others were disappointed in their ability to do community activities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLCommActivityAbilityDisapScl Recommended CDE
24 Quality of Life - Leisure activity ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to do leisure activites in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLLeisrActvtyAbltDsppntmntScl Recommended CDE
25 Quality of Life - Leisure activity limitation bother past week scale  The scale which represents the extent to which the participant was bothered by limitations in doing their hobbies or leisure activities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLLeisureActivtyLimitnScl Recommended CDE
26 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability to do things for fun at home past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do things for fun at home in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiFunAtHomeScale Recommended CDE
27 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability to do leisure activities past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do leisure activities in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiDoLeisrActScale Recommended CDE
28 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability do all leisure activity really important past week scale  The scale which represents the extent of the participant's satisfaction with ability to do all of the important leisure activities in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiLeisureActScale Recommended CDE
29 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability to do all of important community activities past week scale  The scale which represents the extent of the participant's satisfaction with ability to do all of the important community activities in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyCommunityActScale Recommended CDE
30 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with current level of social activity past week scale  The scale which represents the extent of the participant's satisfaction with his/her current level of social activity in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyLvlSocActvtyScale Recommended CDE
31 Quality of Life - Work people disappointment self-assessment past week scale  The scale which represents the extent to which the participant felt that they were disappointing to other people at work in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLWrkPplDsppntmntSlfAssmntScl Recommended CDE
32 Quality of Life - Daily routine performance disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to perform their daily routines in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLDailyRoutnPerfmDisppntntScl Recommended CDE
33 Quality of Life - Work home ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed by their ability to work (include work at home) in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLWorkHomeAbltyDisappntmntScl Recommended CDE
34 Quality of Life - Daily routine limitation bother past week scale  The scale which represents the extent to which the participant was bothered by limitations in performing their daily routines in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLDailyRoutnLimitnBotherScl Recommended CDE
35 Quality of Life - Personal responsibility care ability disappointment past week scale  The scale which represents the extent to which the participant was disappointed in their ability to take care of personal and household responsibilities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLPrsnlRspnbltyCreAbltyDspScl Recommended CDE
36 Quality of Life - Work home limitation bother past week scale  The scale which represents the extent to which the participant was bothered by limitatiosn in performing their work (include work at home) in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLWorkHomeLimitationBotherScl Recommended CDE
37 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability run errands past week scale  The scale which represents how often the participant's satisfaction with his/her ability to run errands in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiRunErrandsScale Recommended CDE
38 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability perform daily routine past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to perform daily routines in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiDoDayRoutnScale Recommended CDE
39 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability work past week scale  The scale which represents how often the participant's satisfaction with his/her ability to work in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiToWorkScale Recommended CDE
40 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with ability do work really important past week scale  The scale which represents the extent of the participant's satisfaction with his/her ability to do the work that is really important to him in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyAbiImprtntWrkScale Recommended CDE
41 Quality of Life - Personal responsibility care ability satisfaction past week scale  The scale which represents the extent to which the participant was satisfied with their ability to take care of personal and household responsibilities in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLPrsnlRpnbltyCarAbltySftnScl Recommended CDE
42 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with amount time spend work past week scale  The scale which represents the extent of the participant's satisfaction with the amount of time he/she spent doing work in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfyTimeDoWorkScale Recommended CDE
43 Patient-Reported Outcome Measurement Information System (PROMIS) - satisfaction with amount time spend perform daily routine past week scale  The scale which represents the extent of the participant's satisfaction with the amount of time he/she spent performing daily routines in the past 7 days, as part of the Patient-Reported Outcome Measurement Information System (PROMIS). PROMISSatsfySpendDayRoutnScale Recommended CDE
44 Quality of Life - Work ability satisfication past week scale  The scale which represents the extent to which the participant was satisfied with their ability to work in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLWorkAbilitySatisfactionScl Recommended CDE
45 Quality of Life - Work performance limitation bother past week scale  The scale which represents the extent to which the participant was bothered by limitations in performing their work in the past 7 days, as part of Neuro-QOL Satisfaction with SRA. QoLWrkPerfmncLimitatnBothrScl 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