CDE Detailed Report

Disease: Amyotrophic Lateral Sclerosis
Sub-Domain: Quality of Life/Patient Reported Outcomes
CRF: Quality of Life in Swallowing Disorders (SWAL-QOL)

Displaying 1 - 50 of 66
CDE ID CDE Name Variable Name Definition Short Description Additional Notes (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 / Guideline) Sub Domain Name Domain Name Size Input Restrictions Min Value Max Value Measurement Type External Id Loinc External Id Snomed External Id caDSR External Id CDISC
C18105 Quality of Life in Swallowing Disorders (SWAL-QOL) - help questionnaire indicator SWALQOLHlpQuestnnrInd Indicator of whether subject received help to complete this questionnaire or not, Indicator of whether subject received help to complete this questionnaire or not, Did anybody help you complete this questionnaire? 1;2 1;2 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10305 Quality of Life in Swallowing Disorders (SWAL-QOL) - careful diet annoy problem indicator SWALQOLCarflAnnyProbInd Scale assessing how true the following statement has been for the participant during the last month: Having to be so careful when I eat or drink annoys me. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much having to be careful when eating or drinking annoys the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having to be so careful when I eat or drink annoys me. 1;2;3;4;5 Always true;Often true;Sometimes true;Hardly ever true;Never true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10284 Quality of Life in Swallowing Disorders (SWAL-QOL) - choking liquid problem indicator SWALQOLChockngLiqProbInd Scale assessing how true the following statement has been for the participant during the last month: Choking when you take liquids. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject chokes on liquid when drinking, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Choking when you take liquids 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10316 Quality of Life in Swallowing Disorders (SWAL-QOL) - feeling tired indicator SWALQOLFlngTrdInd Scale assessing how true the following statement has been for the participant during the last month: Feel tired? As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels tired, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Feel tired? 1;2;3;4;5 All of the time;Most of the time;Some of the time;A little of the time;None of the time Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17839 Quality of Life in Swallowing Disorders (SWAL-QOL) - help method type SWALQOLHelpMethdTyp Type of help the subject/participant received filling out the questionnaire. Type of help the subject/participant received filling out the questionnaire. If someone helped you fill out this questionnaire, how did that person help you? 1;2;3 Read you the questions and/or wrote down the answers you gave;Answered the questions for you;Helped in some other way Numeric Values

circle one

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10295 Quality of Life in Swallowing Disorders (SWAL-QOL) - coughing stuck food liquid out mouth problem indicator SWALQOLCghStkFdLiqOtMthProbInd Scale assessing how true the following statement has been for the participant during the last month: Coughing food or liquid out of your mouth when it gets stuck. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels the need to cough food or liquid out of mouth when it's stuck, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Coughing food or liquid out of your mouth when it gets stuck 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18106 Quality of Life in Swallowing Disorders (SWAL-QOL) - help method indicator SWALQOLHlpMethdInd If received help, what type of help did the subject receive, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) If received help, what type of help did the subject receive, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) If someone helped you fill out this questionnaire, how did that person help you? 1;2;3 1;2;3 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10306 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem discourage indicator SWALQOLSwllwngProbDiscrgInd Scale assessing how true the following statement has been for the participant during the last month: I've been discouraged by my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much subject gets discouraged with swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I've been discouraged by my swallowing problem. 1;2;3;4;5 Always true;Often true;Sometimes true;Hardly ever true;Never true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10285 Quality of Life in Swallowing Disorders (SWAL-QOL) - thick saliva phlegm problem indicator SWALQOLThicSalvPhlgmProbInd Scale assessing how true the following statement has been for the participant during the last month: Having thick saliva or phlegm. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences having thick saliva or phlegm, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having thick saliva or phlegm 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10317 Quality of Life in Swallowing Disorders (SWAL-QOL) - trouble staying asleep indicator SWALQOLTrblStyngAslpInd Scale assessing how true the following statement has been for the participant during the last month: Having trouble staying asleep? As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject has trouble staying asleep, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having trouble staying asleep? 1;2;3;4;5 All of the time;Most of the time;Some of the time;A little of the time;None of the time Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17840 Quality of Life in Swallowing Disorders (SWAL-QOL) - marital status SWALQOLMaritalStatus Status of whether the participant is married, divorced, separated, widowed, or never married. Status of whether the participant is married, divorced, separated, widowed, or never married. What is your current marital status 1;2;3;4;5 Never married;Married;Divorced;Separated;Widowed Numeric Values

circle one

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10296 Quality of Life in Swallowing Disorders (SWAL-QOL) - figuring out eating problem indicator SWALQOLFigrngOtEatngProbInd Scale assessing how true the following statement has been for the participant during the last month: Figuring out what I can and can't eat is a problem for me. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject feels figuring out what to eat/not to eat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Figuring out what I can and can't eat is a problem for me 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18107 Quality of Life in Swallowing Disorders (SWAL-QOL) - completion date SWALQOLCompltDate Date the subject completed this questionnaire, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Date the subject completed this questionnaire, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Please write today's date here Date or Date & Time No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Free-Form Entry

C10275 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem indicator SWALQOLSwllwProbInd Scale assessing how true the following statement has been for the participant during the last month: Dealing with my swallowing problem is very difficult, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how difficult dealing with swallowing problem is, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Dealing with my swallowing problem is very difficult. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10307 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem frustrating indicator SWALQOLSwllwngProbFrstrngInd Scale assessing how true the following statement has been for the participant during the last month: My swallowing problem frustrates me. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much swallowing problem frustrates the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) My swallowing problem frustrates me. 1;2;3;4;5 Always true;Often true;Sometimes true;Hardly ever true;Never true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10286 Quality of Life in Swallowing Disorders (SWAL-QOL) - gagging problem indicator SWALQOLGagngProbInd Scale assessing how true the following statement has been for the participant during the last month: Gagging. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences gagging problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Gagging 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10318 Quality of Life in Swallowing Disorders (SWAL-QOL) - feeling exhausted indicator SWALQOLFlngExhstdInd Scale assessing how true the following statement has been for the participant during the last month: Feel exhausted? As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels exhausted, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Feel exhausted? 1;2;3;4;5 All of the time;Most of the time;Some of the time;A little of the time;None of the time Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17841 Quality of Life in Swallowing Disorders (SWAL-QOL) - questionnaire general comment text SWALQOLQuestGenComntTxt Text regarding the subject's/participant's comments about the Quality of Life in Swallowing Disorders (SWAL-QOL) questionnaire. Text regarding the subject's/participant's comments about the Quality of Life in Swallowing Disorders (SWAL-QOL) questionnaire. Comments Alphanumeric

Do you have any comments about this questionnaire? We welcome your comments about the questionnaire in general or about specific questions, especially any that were unclear or confusing to you

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points 255

Free-Form Entry

C10297 Quality of Life in Swallowing Disorders (SWAL-QOL) - difficult find food indicator SWALQOLDifcltFndFdInd Scale assessing how true the following statement has been for the participant during the last month: It is difficult to find foods that I both like and can eat. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject feels finding food that subject both like and can eat is difficult, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) It is difficult to find foods that I both like and can eat. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18108 Quality of Life in Swallowing Disorders (SWAL-QOL) - comment text SWALQOLCmntTxt Comment from the subject regarding this questionnaire, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Comment from the subject regarding this questionnaire, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Do you have any comments about this questionnaire? We welcome your comments about the questionnaire in general or about specific questions, especially any that were unclear or confusing to you. Alphanumeric No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points 255

Free-Form Entry

C10276 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem distraction indicator SWALQOLSwllwProbDistrctnInd Scale assessing how true the following statement has been for the participant during the last month: My swallowing problem is a major distraction in my life, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how distracting swallowing problem is, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) My swallowing problem is a major distraction in my life. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10308 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem impatient problem indicator SWALQOLSwllwngProbImpttProbInd Scale assessing how true the following statement has been for the participant during the last month: I get impatient dealing with my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how impatient the subject gets with swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I get impatient dealing with my swallowing problem. 1;2;3;4;5 Always true;Often true;Sometimes true;Hardly ever true;Never true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10287 Quality of Life in Swallowing Disorders (SWAL-QOL) - drooling problem indicator SWALQOLDrlngProbInd Scale assessing how true the following statement has been for the participant during the last month: Drooling. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences drooling problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Drooling 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10319 Quality of Life in Swallowing Disorders (SWAL-QOL) - intake feeding tube indicator SWALQOLIntkFdngTubInd Scale assessing how true the following statement has been for the participant during the last month: Do you now take any food or liquid through a feeding tube? As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Scale assessing how true the following statement has been for the participant during the last month: Do you now take any food or liquid through a feeding tube? As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Do you now take any food or liquid through a feeding tube? 1;2 No;Yes Numeric Values

Circle one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17842 Quality of Life in Swallowing Disorders (SWAL-QOL) - racial ethnic type SWALQOLRacEthnicTyp Race or ethnicity of the subject/participant. Race or ethnicity of the subject/participant. What is your main racial or ethnic group? 1;2;3;4;5 White or Caucasian, but not Hispanic or Latino;Black or African-American, but not Hispanic or Latino;Hispanic or Latino;Asian;Other Numeric Values

circle one

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10298 Quality of Life in Swallowing Disorders (SWAL-QOL) - people hard understanding problem indicator SWALQOLPplHrdUndstndProbInd Scale assessing how true the following statement has been for the participant during the last month: People have a hard time understanding me. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject feels that people have a hard time understanding, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) People have a hard time understanding me. 1;2;3;4;5 All of the time;Most of the time;Some of the time;A little of the time;None of the time Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10277 Quality of Life in Swallowing Disorders (SWAL-QOL) - eating importance indicator SWALQOLEatngImprtncInd Scale assessing how true the following statement has been for the participant during the last month: Most days, I don't care if I eat or not, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much the subject cares about eating, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Most days, I don't care if I eat or not. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10309 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem not go out indicator SWALQOLSwllwngProbNtGoOtInd Scale assessing how true the following statement has been for the participant during the last month: I do not go out to eat because of my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject doesn't go out to eat because of swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I do not go out to eat because of my swallowing problem. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10288 Quality of Life in Swallowing Disorders (SWAL-QOL) - chewing problem indicator SWALQOLChewngProbInd Scale assessing how true the following statement has been for the participant during the last month: Problems Chewing. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences problem with chewing, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Problems Chewing 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10320 Quality of Life in Swallowing Disorders (SWAL-QOL) - consistency texture food indicator SWALQOLConsstncyTxtrFdInd Category of consistency or texture of the food the participant has been eating most often in the last week. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates consistency or texture of the food subject has been eating in the last week, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Please circle the letter of the one description below that best describes the consistency or texture of the food you have been eating most often in the last week. A;B;C;D;E A;B;C;D;E Alphanumeric

Choose only one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19499 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18099 Quality of Life in Swallowing Disorders (SWAL-QOL) - birth date SWALQOLBrthDate Date of the subject's birthday, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Date of the subject's birthday, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Please write in your date of birth here Date or Date & Time No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Free-Form Entry

C10299 Quality of Life in Swallowing Disorders (SWAL-QOL) - difficult speak clear problem indicator SWALQOLDifcltSpkClrProbInd Scale assessing how true the following statement has been for the participant during the last month: It's been difficult for me to speak clearly. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels it's difficult to speak clearly, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) It's been difficult for me to speak clearly. 1;2;3;4;5 All of the time;Most of the time;Some of the time;A little of the time;None of the time Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10278 Quality of Life in Swallowing Disorders (SWAL-QOL) - eating longer indicator SWALQOLEatngLngrInd Scale assessing how true the following statement has been for the participant during the last month: It takes me longer to eat than other people, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject takes how much longer to eat than other people, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) It takes me longer to eat than other people. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10310 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem hard social life indicator SWALQOLSwllwProbHrdSoclLifInd Scale assessing how true the following statement has been for the participant during the last month: My swallowing problem makes it hard to have a social life. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject's swallowing problem makes it hard to have a social life, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) My swallowing problem makes it hard to have a social life. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10289 Quality of Life in Swallowing Disorders (SWAL-QOL) - excess saliva phlegm problem indicator SWALQOLExcsSalvPhlgmProbInd Scale assessing how true the following statement has been for the participant during the last month: Having excess saliva or phlegm. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences having excess saliva or phlegm, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having excess saliva or phlegm 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10321 Quality of Life in Swallowing Disorders (SWAL-QOL) - consistency liquid indicator SWALQOLConsstncyLiqInd Category of consistency or texture of the liquids participant has been drinking most often in the last week. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates consistency of the liquid subject has been drinking in the last week, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Please circle the letter of the one description below that best describes the consistency of liquids you have been drinking most often in the last week. A;B;C;D;E A;B;C;D;E Alphanumeric

Choose only one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19500 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18100 Quality of Life in Swallowing Disorders (SWAL-QOL) - age value SWALQOLAgVal Age of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Age of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) What is your age today? Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Free-Form Entry

C10300 Quality of Life in Swallowing Disorders (SWAL-QOL) - fear choke food problem indicator SWALQOLFrChokFdProbInd Scale assessing how true the following statement has been for the participant during the last month: I fear I may start choking when I eat food. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject feels fear of choking on food again, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I fear I amy start choking when I eat food. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10279 Quality of Life in Swallowing Disorders (SWAL-QOL) - rare realization hunger indicator SWALQOLRarRealztnHugrInd Scale assessing how true the following statement has been for the participant during the last month: I'm rarely hungry anymore, as part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how rarely subject feels hungry, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I'm rarely hungry anymore. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10311 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem changed activities indicator SWALQOLSwllwngProbChngdActInd Scale assessing how true the following statement has been for the participant during the last month: My usual work or leisure activities have changed because of my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject's work or leisure activities have changed because of swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) My usual work or leisure activities have changed because of my swallowing problem. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10290 Quality of Life in Swallowing Disorders (SWAL-QOL) - clear throat problem indicator SWALQOLClrThrtProbInd Scale assessing how true the following statement has been for the participant during the last month: Having to clear your throat. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences having to clear throat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Having to clear your throat 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10322 Quality of Life in Swallowing Disorders (SWAL-QOL) - general health indicator SWALQOLGenrlHlthInd Scale assessing the general health of the participant. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates the subject's general health condition, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) In general, would you say your health is 1;2;3;4;5 Poor;Fair;Good;Very Good;Excellent Numeric Values

Circle one

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18101 Quality of Life in Swallowing Disorders (SWAL-QOL) - gender indicator SWALQOLGendrInd Gender of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Gender of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Are you 1;2 1;2 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10301 Quality of Life in Swallowing Disorders (SWAL-QOL) - worry pneumonia problem indicator SWALQOLWryPnemnProbInd Scale assessing how true the following statement has been for the participant during the last month: I worry about getting pneumonia. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject fear of getting pneumonia, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I worry about getting pneumonia. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10280 Quality of Life in Swallowing Disorders (SWAL-QOL) - long eating period indicator SWALQOLLngEatngPerdInd Scale assessing how true the following statement has been for the participant during the last month: It takes me forever to eat a meal. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how much longer subject to eat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) It takes me forever to eat a meal. 1;2;3;4;5 Very much true;Quite a bit true;Somewhat true;A little true;Not at all true Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10312 Quality of Life in Swallowing Disorders (SWAL-QOL) - swallowing problem enjoyable social indicator SWALQOLSwllwngProbEnjblSoclInd Scale assessing how true the following statement has been for the participant during the last month: Social gatherings (like holidays or get-togethers) are not enjoyable because of my swallowing problem. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates subject no longer enjoys social gatherings because of swallowing problem, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Social gatherings (like holidays or get-togethers) are not enjoyable because of my swallowing problem. 1;2;3;4;5 Strongly agree;Agree;Uncertain;Disagree;Strongly disagree Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10291 Quality of Life in Swallowing Disorders (SWAL-QOL) - food sticking throat problem indicator SWALQOLFdStckngThrtProbInd Scale assessing how true the following statement has been for the participant during the last month: Food sticking in your throat. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject experiences food sticking to throat, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Food sticking in your throat 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C17833 Quality of Life in Swallowing Disorders (SWAL-QOL) - questionnaire help indicator SWALQOLQuestHelpInd Indicator of whether the subject/participant received help filling out the Quality of Life in Swallowing Disorders (SWAL-QOL) questionnaire. Indicator of whether the subject/participant received help filling out the Quality of Life in Swallowing Disorders (SWAL-QOL) - questionnaire. Did anybody help you complete this questionnaire? 1;2 No, I did it myself;Yes, someone helped me fill it out Numeric Values

circle one

No references available Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C18102 Quality of Life in Swallowing Disorders (SWAL-QOL) - race indicator SWALQOLRcInd Racial group of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) Racial group of the subject, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) What is your main racial or ethnic group? 1;2;3;4;5 1;2;3;4;5 Numeric Values No references available Adult Supplemental 3.00 2013-07-18 09:11:50.26 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

C10302 Quality of Life in Swallowing Disorders (SWAL-QOL) - fear choke liquid problem indicator SWALQOLFrChokLiqProbInd Scale assessing how true the following statement has been for the participant during the last month: I am afraid of choking when I drink liquids. As part of Quality of Life in Swallowing Disorders (SWAL-QOL). Indicates how often subject fears choking on liquid again, as part of the Quality of Life in Swallowing Disorders (SWAL-QOL) I am afraid of choking when I drink liquids. 1;2;3;4;5 Almost always;Often;Sometimes;Hardly ever;Never Numeric Values

Circle one number on each line

Colleen A. McHorney, PhD, US Outcomes Research, Merck & Co., Inc., 351 North Sumneytown Pike, UG2MW-05, North Wales, PA 19454 Adult Supplemental 3.00 2013-07-22 16:57:17.79 Quality of Life in Swallowing Disorders (SWAL-QOL) Quality of Life/Patient Reported Outcomes Outcomes and End Points

Single Pre-Defined Value Selected

CSV