Form:NOD PDAC Patient Questionnaire v5.0


CDE IDCDE Description
* 421EDRN Participant ID (Go To: 1219)
* 1219Date of contact (MM/DD/YYYY): (Go To: 1832)
   1832Participant initials: (Go To: 423)
* 423EDRN Protocol ID (Go To: 422)
* 422EDRN Site ID (Go To: 929)
* 929EDRN Staff ID of the person who collected the data: (Go To: 2176)
* 2176Visit code (Go To: 4820)
 
Permissible Values (value):6 months (6)
 
 12 months (12)
 
 24 months (24)
 
 36 months (36)
* 4820Has the participant been diagnosed with study-related disease? (Go To: 1334)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 4821)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4821Pancreatic diagnosis (check all that apply) (Go To: 1334)
 
Permissible Values (value):Prefer not to answer (89)
 
 Pancreatic cysts (3)
 
 Pancreatitis (2)
 
 Other (95)
 
 Unknown (99)
* 1334New primary cancer [other than basal/squamous cell skin cancer] confirmed by a doctor since last routine study contact? (Have you been diagnosed with a new primary cancer [other than basal/squamous cell skin cancer] since your last routine study contact?) (Go To: 3165)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 1343)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1343Cancer type/location (Go To: 3165)
 
Permissible Values (value):Bladder (1)
 
 Bone (2)
 
 Brain (3)
 
 Breast (4)
 
 Cervix (5)
 
 Colon (6)
 
 Esophagus (7)
 
 Head & neck (mouth, nose, and throat) (8)
 
 Kidney (9)
 
 Liver (10)
 
 Leukemia (11)
 
 Lung (12)
 
 Lymphoma, including Hodgkins (13)
 
 Ovary (14)
 
 Prostate (16)
 
 Rectum (17)
 
 Skin (melanoma, no basal or squamous) (18)
 
 Stomach (19)
 
 Thyroid (20)
 
 Uterus (21)
 
 Endometrium (22)
 
 Testis (24)
 
 Vagina (26)
 
 Gall bladder (40)
 
 Mesothelioma (42)
 
 Multiple myeloma (44)
 
 Prefer not to answer (89)
 
 Other (95)
 
 Unknown (99)
* 3165Has a doctor diagnosed you with yellow jaundice? (Yellow jaundice, in which the skin/eyes turn a yellowish color, is a symptom of liver problems.) (Go To: 4795)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4795Has the participant experienced any of the following symptoms? (Check all that apply) (Go To: 5658)
 
Permissible Values (value):None (0)
 
 Nausea (1)
 
 Vomiting (2)
 
 Indigestion (5)
 
 Heart burn (6)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5658Experience back pain? (Go To: 5659)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 5026)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5026Severity of back pain (Go To: 5659)
 
Permissible Values (value):No pain (0)
 
 Mild pain (does not require narcotics) (1)
 
 Severe pain (requires narcotics) (2)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5659Experience abdominal pain? (Go To: 5027)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 5025)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5025Severity of abdominal pain (Go To: 5027)
 
Permissible Values (value):No pain (0)
 
 Mild pain (does not require narcotics) (1)
 
 Severe pain (requires narcotics) (2)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5027My appetite is (Go To: 5028)
 
Permissible Values (value):Very poor (1)
 
 Poor (2)
 
 Average (3)
 
 Good (4)
 
 Very good (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5028When I eat (Go To: 5029)
 
Permissible Values (value):I feel full after eating only a few mouthfuls (1)
 
 I feel full after eating about a third of a meal (2)
 
 I feel full after eating over half a meal (3)
 
 I feel full after eating most of the meal (4)
 
 I hardly ever feel full (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5029Food tastes (Go To: 5030)
 
Permissible Values (value):Very bad (1)
 
 Bad (2)
 
 Average (3)
 
 Good (4)
 
 Very good (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 5030Normally I eat (Go To: 4799)
 
Permissible Values (value):Less than one meal a day (1)
 
 One meal a day (2)
 
 Two meals a day (3)
 
 Three meals a day (4)
 
 More than three meals a day (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4799Rate the level of your lack of appetite (Go To: 4801)
 
Permissible Values (value):I dont have a lack of appetite (1)
 
 Very mild (can usually be ignored) (2) (Go To: 4800)
 
 Mild (can be ignored if I don’t think about it) (3) (Go To: 4800)
 
 Moderate (cannot be ignored, but does not affect your lifestyle) (4) (Go To: 4800)
 
 Severe (affects your life) (5) (Go To: 4800)
 
 Very severe (markedly affects your life) (6)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4800Have you experienced a lack of appetite? (Go To: 4801)
 
Permissible Values (value):No (0)
 
 Yes (1)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4801How would you compare your appetite (desire to eat) now to what it was 12 months ago? (Go To: 4802)
 
Permissible Values (value):The same (1)
 
 Increased (2)
 
 Slightly reduced (about 75% of normal) (3)
 
 Moderately reduced (about 50% of normal) (4)
 
 Markedly reduced (about 25% of normal or less) (5)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4802Have you experienced fatigue, breathlessness, and/or chest pain? (Go To: 1045)
 
Permissible Values (value):No (0)
 
 Yes (1) (Go To: 4803)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 4803Which of the following describes your ability to carry out your usual activities? (Go To: 1045)
 
Permissible Values (value):I am able to carry out my usual activities. (1)
 
 I can carry out my usual activities with effort. (2)
 
 I am unable to carry out my usual activities. (3)
 
 Prefer not to answer (89)
 
 Unknown (99)
* 1045Performance status (Which of the following options would you say describes your current performance status?) (Go To: 1097)
 
Permissible Values (value):Fully active, able to carry on all pre-disease performance without restriction (0)
 
 Restricted in physically strenuous activity but ambulatory and able to carry out work of a light or sedentary nature, e.g., light house work, office work (1)
 
 Ambulatory and capable of all selfcare but unable to carry out any work activities. Up and about more than 50% of waking hours (2)
 
 Capable of only limited selfcare, confined to bed or chair more than 50% of waking hours (3)
 
 Completely disabled. Cannot carry on any selfcare. Totally confined to bed or chair (4)
 
 Prefer not to answer (89)
 
 Unknown (99)
   1097Comments (do not include any participant identifiers) (Go To: End of Form)