CDE Detailed Report
Subdomain Name: Quality of Life/Patient Reported Outcomes
CRF: welcome
Displaying 1 - 24 of 24
CDE ID | CDE Name | Variable Name | Definition | Short Description | Question Text | Permissible Values | Description | Data Type | Disease Specific Instructions | Disease Specific Reference | Population | Classification (e.g., Core) | Version Number | Version Date | CRF Name (CRF Module / Guidance) | Subdomain Name | Domain Name | Size | Input Restrictions | Min Value | Max Value | Measurement Type | External Id Loinc | External Id Snomed | External Id caDSR | External Id CDISC |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
C21309 | Quality of Life - Stigma illness people ignore good input recent assessment scale | QoLStgmIlnssPplIgnrInptRcntScl | The scale representing how often people tended to ignore the participant's good points because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often people tended to ignore the participant's good points because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness people tended to ignore my good points. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21299 | Quality of Life - Stigma illness unkind treatment recent assessment scale | QoLStigmIllnssUnkndTreatmntScl | The scale representing how often people were unkind to the participant because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often people were unkind to the participant because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, people were unkind to me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21310 | Quality of Life - Stigma illness burden worry recent assessment scale | QoLStgmIlnssBrndnWrryRcntScl | The scale representing how often the participant worried that he/she was a burden to others because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant worried that he/she was a burden to others because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, I worried that I was a burden to others. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21300 | Quality of Life - Stigma illness blame recent assessment scale | QoLStigmaIllnssBlameRecentScl | The scale representing how often some people acted as though it was the participant's own fault they have this illness lately, as part of Neuro-QOL Stigma | The scale representing how often some people acted as though it was the participant's own fault they have this illness lately, as part of Neuro-QOL Stigm | Lately some people acted as though it was my own fault I have this illness. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21311 | Quality of Life - Stigma illness speech embarassment recent assessment scale | QoLStgmIlnssSpchEmbrsmntRctScl | The scale representing how often the participant felt embarassed about their speech lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt embarassed about their speech lately, as part of Neuro-QOL Stigm | Lately I felt embarassed about my speech. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21301 | Quality of Life - Stigma illness emotional distance recent assessment scale | QoLStigmIllnssEmotnlDstRcntScl | The scale representing how often the participant felt emotionally stable lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt emotionally stable lately, as part of Neuro-QOL Stigm | Lately because of my illness, I felt emotionally distant from other people | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21312 | Quality of Life - Stigma illness different feel compare other people recent assessment scale | QoLStgmIlnssFeelCmprPplRcntScl | The scale representing how often the participant felt different from others because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt different from others because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, I felt different from others. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21302 | Quality of Life - Stigma illness ridicule recent assessment scale | QoLStigmIllnssRidiculeRcntScl | The scale representing how often people made fun of the participant because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often people made fun of the participant because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, people made fun of me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21313 | Quality of Life - Stigma illness blame self problem recent assessment scale | QoLStgmIlnssBlamSlfProbRcntScl | The scale representing how often the participant tended to blame himself/herself for their problems lately, as part of Neuro-QOL Stigma | The scale representing how often the participant tended to blame himself/herself for their problems lately, as part of Neuro-QOL Stigm | Lately I tended to blame myself for my problems. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21303 | Quality of Life - Stigma illness social situation embarassment recent assessment scale | QoLStigmIlnssSocSituEmbRcntScl | The scale representing how often the participant felt embarassed in social situations because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt embarassed in social situations because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, I felt embarassed in social situations. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21314 | Quality of Life - Stigma illness new friend avoidance recent assessment scale | QoLStgmIlnssNewFrndAvdRcntScl | The scale representing how often the participant avoided making new friends to avoid telling others about their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant avoided making new friends to avoid telling others about their illness lately, as part of Neuro-QOL Stigm | Lately I avoided making new friends to avoid telling others about my illness. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21293 | Quality of Life - Stigma illness recent assessment scale | QoLStgmaIllnessRcntAssessmtScl | The scale representing how often the participant was avoided by some people because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant was avoided by some people because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness some people avoided me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21304 | Quality of Life - Stigma illness stranger stare recent assessment scale | QoLStgmIllnssStrngStareRcntScl | The scale representing how often strangers tended to stare at the participant because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often strangers tended to stare at the participant because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, strangers tended to stare at me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21315 | Quality of Life - Stigma illness other people lost job recent assessment scale | QoLStgmIlnssOthPplLstJbRcntScl | The scale representing how often people with the participant's illness lost their jobs when their employers found out about it lately, as part of Neuro-QOL Stigma | The scale representing how often people with the participant's illness lost their jobs when their employers found out about it lately, as part of Neuro-QOL Stigm | Lately people with my illness lost their jobs when their employers found out about it. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21294 | Quality of Life - Stigma illness left out event recent assessment scale | QoLStgmaIlnssLftOutEvntRcntScl | The scale representing how often the participant felt left out of things because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt left out of things because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, I felt left out of things. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21305 | Quality of Life - Stigma illness other people attitude worry recent assessment scale | QoLStgmIlnssOthPplAttidRcntScl | The scale representing how often the participant worried about other people's attitudes towards him/her lately, as part of Neuro-QOL Stigma | The scale representing how often the participant worried about other people's attitudes towards him/her lately, as part of Neuro-QOL Stigm | Lately because of my illness, I worried about other people's attitudes towards me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21316 | Quality of Life - Stigma illness lost friend recent assessment scale | QoLStgmIlnssLostFriendRcntScl | The scale representing how often the participant lost friends by telling them that they have this illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant lost friends by telling them that they have this illness lately, as part of Neuro-QOL Stigm | Lately I have lost friends by telling them that I have this illness. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21295 | Quality of Life - Stigma illness avoid visual contact recent assessment scale | QoLStgmaIllnssAvodCntctRcntScl | The scale representing how often people avoided looking at the participant because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often people avoided looking at the participant because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, people avoided looking at me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21306 | Quality of Life - Stigma illness unfair treatment recent assessment scale | QoLStgmIllnssUnfrTrtmntRcntScl | The scale representing how often the participant was treated unfairly by others because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant was treated unfairly by others because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, I was treated unfairly by others. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21296 | Quality of Life - Stigma illness embarrassment recent assessment scale | QoLStgmaIllnssEmbrssmtRcntScl | The scale representing how often the participant felt embarrassed about their illness lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt embarrassed about their illness lately, as part of Neuro-QOL Stigm | Lately I felt embarassed about my illness. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21307 | Quality of Life - Stigma illness affect appearance unhappiness recent assessment scale | QoLStgmIlnssApprncUnhpyRcntScl | The scale representing how often the participant was unhappy about the way their illness affected their appearance lately, as part of Neuro-QOL Stigma | The scale representing how often the participant was unhappy about the way their illness affected their appearance lately, as part of Neuro-QOL Stigm | Lately I was unhappy about how my illness affected my appearance. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21297 | Quality of Life - Stigma illness uncomfortable other people recent assessment scale | QoLStgmIlnssUncmftblPplRcntScl | The scale representing how often some people seemed uncomfortable with the participant because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often some people seemed uncomfortable with the participant because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, some people seemed uncomfortable with me. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21308 | Quality of Life - Stigma illness difficult maintain cleanliness recent assessment scale | QoLStgmIlnssDifMaintClnRcntScl | The scale representing how often it was hard for the participant to stay neat and clean because of their illness lately, as part of Neuro-QOL Stigma | The scale representing how often it was hard for the participant to stay neat and clean because of their illness lately, as part of Neuro-QOL Stigm | Lately because of my illness, it was hard for me to stay neat and clean. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |
|||||||||
C21298 | Quality of Life - Stigma illness physical limit embarassment recent assessment scale | QoLStgmIllnssPhyclLmtRcntScl | The scale representing how often the participant felt embarassed because of their physical limitations lately, as part of Neuro-QOL Stigma | The scale representing how often the participant felt embarassed because of their physical limitations lately, as part of Neuro-QOL Stigm | Lately I felt embarassed because of my physical limitations. | 5;4;3;2;1 | always;Often;Sometimes;Rarely;Never | Numeric Values |
Part of Neuro-QOL Adult Bank - Stigma |
Adult;Pediatric | Supplemental | 1.00 | 2015-07-17 09:23:23.0 | Neuro-QOL Adult Bank - Stigma | Quality of Life/Patient Reported Outcomes | Outcomes and End Points |
Single Pre-Defined Value Selected |