Form Structure: Neuro-QoL Satisfaction with Social Roles and Activities Long Form
This form structure is an organized set of data definitions for a copyrighted form
Resource:
FITBIR
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
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) - 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 |
Keywords
