CDE Detailed Report

Disease: content
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
Part of Stigma-Short Form 7a
NQSTG06

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
Part of Stigma-Short Form 7a
NQSTG02

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
Part of Stigma-Form 7a
NQSTG04

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
Part of Stigma-Short Form 7a
NQSTG08

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
Part of Stigma-Short Form 7a
NQSTG01

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

CSV