Single Wave Study
General Information
Title
Quality of life colon/rectal cancer 2009
Project Number
2.0
Abstract
In 2009 a questionnaire has been composed treating the subjects health, health related quality of life and health complaints after the diagnosis colon or rectal cancer.
Longitudinal Type
Single Wave Study
Begin date
01-01-2009
End date
30-06-2009
Topics
Researcher
Lonneke van de Poll - Franse
Publisher
IKNL Profiles study
Copyright
Copyright IKNL Profiles study
Codebooks and other materials
View Documentation
Codebook in English
Variables
| Variable name | Variable Label | Variable Type |
|---|---|---|
| cr09a01pat_id | Patient identifier | preloaded |
| cr09a01t_gesl | Gender | preloaded |
| cr09a01tumor | Tumor | preloaded |
| cr09a01lftvrg | Age at time of study | derived |
| cr09a01treat | Primary treatment | preloaded |
| cr09a01stadkort | Stage of disease | preloaded |
| cr09a01grade | Grade of tumor | preloaded |
| cr09a01ovljrn | Years since diagnosis | derived |
| cr09a01BMI | BMI | derived |
| cr09a01t_ses3 | Social Economic Status in 3(4) categories | preloaded |
| cr09a02v01 | What is currently your marital status? | directly measured |
| cr09a02v02 | What is the highest education level that you have completed? | directly measured |
| cr09a02v03 | Do you have a paid job at this moment? | directly measured |
| cr09a02v04 | Paid job hours/week | directly measured |
| cr09a02v05 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| cr09a06v01 | Which changes have you experienced in your work situation due to cancer? | directly measured |
| cr09a06v02 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| cr09a06v03 | What was the outcome? | directly measured |
| cr09a06v04 | Did you have trouble getting life insurance, because of cancer? | directly measured |
| cr09a06v05 | What was the outcome? | directly measured |
| cr09a06v06 | Did you have trouble getting mortgage, because of cancer? | directly measured |
| cr09a06v07 | What was the outcome? | directly measured |
| cr09a03v01 | Do you smoke? | directly measured |
| cr09a03v02 | Number of cigarettes a day | directly measured |
| cr09a03v03 | Number of cigars a day | directly measured |
| cr09a03v04 | Number of packages of pipe tobacco a week | directly measured |
| cr09a03v05 | Do you drink alcohol? | directly measured |
| cr09a03v06 | Number of glasses of beer per week | directly measured |
| cr09a03v07 | Number of glasses of win or port wine per week | directly measured |
| cr09a03v08 | Number of glasses of liquor per week | directly measured |
| cr09a04v01 | Going for a walk in the summer | directly measured |
| cr09a04v02 | Going for a walk in the winter | directly measured |
| cr09a04v03 | Riding a bike in the summer | directly measured |
| cr09a04v04 | Riding a bike in the winter | directly measured |
| cr09a04v05 | Gardening in the summer | directly measured |
| cr09a04v06 | Gardening in the winter | directly measured |
| cr09a04v07 | Keeping house in the summer | directly measured |
| cr09a04v08 | Keeping house in the winter | directly measured |
| cr09a05v01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| cr09a05v02 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| cr09a05v03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| cr09a05v04 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| cr09a05v05 | Do you still have follow up appointments? | directly measured |
| cr09a05v06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| cr09a05v07 | Do you feel comfortable with this follow up scheme? | directly measured |
| cr09a05v08 | Did you receive care after the treatment of your illness? | directly measured |
| cr09a05v09 | Psychologist | directly measured |
| cr09a05v10 | Sexologist | directly measured |
| cr09a05v11 | Social worker | directly measured |
| cr09a05v12 | Pastoral care | directly measured |
| cr09a05v13 | General practitioner | directly measured |
| cr09a05v14 | Dietist | directly measured |
| cr09a05v15 | Physiotherapist | directly measured |
| cr09a05v16 | Recovery program | directly measured |
| cr09a05v17 | Creative therapy | directly measured |
| cr09a05v18 | Oncological nurse | directly measured |
| cr09a05v19 | Peer group | directly measured |
| cr09a07v01 | Do you have now, or did you have in the past 12 months: heart condition | directly measured |
| cr09a07v02 | Do you have now, or did you have in the past 12 months: stroke | directly measured |
| cr09a07v03 | Do you have now, or did you have in the past 12 months: high blood pressure | directly measured |
| cr09a07v04 | Do you have now, or did you have in the past 12 months: asthma, chronic bronchitis, COPD | directly measured |
| cr09a07v05 | Do you have now, or did you have in the past 12 months: diabetes | directly measured |
| cr09a07v06 | Do you have now, or did you have in the past 12 months: ulcer | directly measured |
| cr09a07v07 | Do you have now, or did you have in the past 12 months: kidney disease | directly measured |
| cr09a07v08 | Do you have now, or did you have in the past 12 months: liver disease | directly measured |
| cr09a07v09 | Do you have now, or did you have in the past 12 months: anemia or other blood condition | directly measured |
| cr09a07v10 | Do you have now, or did you have in the past 12 months: thyroid disease | directly measured |
| cr09a07v11 | Do you have now, or did you have in the past 12 months: depression | directly measured |
| cr09a07v12 | Do you have now, or did you have in the past 12 months: arthritis | directly measured |
| cr09a07v13 | Do you have now, or did you have in the past 12 months: backache | directly measured |
| cr09a07v14 | Do you have now, or did you have in the past 12 months: rheumatism | directly measured |
| cr09a07v15 | Are you being treated for: heart condition | directly measured |
| cr09a07v16 | Are you being treated for: stroke | directly measured |
| cr09a07v17 | Are you being treated for: high blood pressure | directly measured |
| cr09a07v18 | Are you being treated for: asthma, chronic bronchitis, COPD | directly measured |
| cr09a07v19 | Are you being treated for: diabetes | directly measured |
| cr09a07v20 | Are you being treated for: ulcer | directly measured |
| cr09a07v21 | Are you being treated for: kidney disease | directly measured |
| cr09a07v22 | Are you being treated for: liver disease | directly measured |
| cr09a07v23 | Are you being treated for: anemia or other blood condition | directly measured |
| cr09a07v24 | Are you being treated for: thyroid disease | directly measured |
| cr09a07v25 | Are you being treated for: depression | directly measured |
| cr09a07v26 | Are you being treated for: arthritis | directly measured |
| cr09a07v27 | Are you being treated for: backache | directly measured |
| cr09a07v28 | Are you being treated for: rheumatism | directly measured |
| cr09a07v29 | Does the condition interfere with your activities: heart condition | directly measured |
| cr09a07v30 | Does the condition interfere with your activities: stroke | directly measured |
| cr09a07v31 | Does the condition interfere with your activities: high blood pressure | directly measured |
| cr09a07v32 | Does the condition interfere with your activities: asthma, chronic bronchitis, COPD | directly measured |
| cr09a07v33 | Does the condition interfere with your activities: diabetes | directly measured |
| cr09a07v34 | Does the condition interfere with your activities: ulcer | directly measured |
| cr09a07v35 | Does the condition interfere with your activities: kidney disease | directly measured |
| cr09a07v36 | Does the condition interfere with your activities: liver disease | directly measured |
| cr09a07v37 | Does the condition interfere with your activities: anemia or other blood condition | directly measured |
| cr09a07v38 | Does the condition interfere with your activities: thyroid disease | directly measured |
| cr09a07v39 | Does the condition interfere with your activities: depression | directly measured |
| cr09a07v40 | Does the condition interfere with your activities: arthritis | directly measured |
| cr09a07v41 | Does the condition interfere with your activities: backache | directly measured |
| cr09a07v42 | Does the condition interfere with your activities: rheumatism | directly measured |
| cr09a19v01 | In general, how would you say your health is? | directly measured |
| cr09a19v02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
| cr09a19v03 | Does your health now limit you in these activities: Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports | directly measured |
| cr09a19v04 | Does your health now limit you in these activities: Moderate activities, such as moving a table, pushing a vacuum cleaner, swimming | directly measured |
| cr09a19v05 | Does your health now limit you in these activities: Lifting or carrying groceries | directly measured |
| cr09a19v06 | Does your health now limit you in these activities: Climbing several flights of stairs | directly measured |
| cr09a19v07 | Does your health now limit you in these activities: Climbing one flight of stairs | directly measured |
| cr09a19v08 | Does your health now limit you in these activities: Bending, kneeling or stooping | directly measured |
| cr09a19v09 | Does your health now limit you in these activities: Walking more than a mile | directly measured |
| cr09a19v10 | Does your health now limit you in these activities: Walking several blocks | directly measured |
| cr09a19v11 | Does your health now limit you in these activities: Walking one block | directly measured |
| cr09a19v12 | Does your health now limit you in these activities: Bathing or dressing yourself | directly measured |
| cr09a19v13 | During the past 4 weeks, as a result of your physical health, did you have any of the following problems: Cut down on the amount of time you spent on work or other activities | directly measured |
| cr09a19v14 | During the past 4 weeks, as a result of your physical health, did you have any of the following problems: Accomplished less than you would like | directly measured |
| cr09a19v15 | During the past 4 weeks, as a result of your physical health, did you have any of the following problems: Were limited in the kind of work or other activities | directly measured |
| cr09a19v16 | During the past 4 weeks, as a result of your physical health, did you have any of the following problems: Had difficulty performing the work or other activities (for example, it took extra effort) | directly measured |
| cr09a19v17 | During the past 4 weeks, as a result of emotional problems, did you have any of the following problems: Cut down the amount of time you spent on work or other activities | directly measured |
| cr09a19v18 | During the past 4 weeks, as a result of emotional problems, did you have any of the following problems: Accomplished less than you would like | directly measured |
| cr09a19v19 | During the past 4 weeks, as a result of emotional problems, did you have any of the following problems: Didn’t do work or other activities as carefully as usual | directly measured |
| cr09a19v20 | During the past 4 weeks, to what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors or groups? | directly measured |
| cr09a19v21 | How much bodily pain have you had during the past 4 weeks? | directly measured |
| cr09a19v22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
| cr09a19v23 | How much of the time during the past 4 weeks: Did you feel full of pep? | directly measured |
| cr09a19v24 | How much of the time during the past 4 weeks: Have you been a very nervous person? | directly measured |
| cr09a19v25 | How much of the time during the past 4 weeks: Have you felt so down in the dumps that nothing could cheer you up? | directly measured |
| cr09a19v26 | How much of the time during the past 4 weeks: Have you felt calm and peaceful? | directly measured |
| cr09a19v27 | How much of the time during the past 4 weeks: Did you have a lot of energy? | directly measured |
| cr09a19v28 | How much of the time during the past 4 weeks: Have you felt downhearted and blue? | directly measured |
| cr09a19v29 | How much of the time during the past 4 weeks: Did you feel worn out? | directly measured |
| cr09a19v30 | How much of the time during the past 4 weeks: Have you been a happy person? | directly measured |
| cr09a19v31 | How much of the time during the past 4 weeks: Did you feel tired? | directly measured |
| cr09a19v32 | During the past 4 weeks, how much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.)? | directly measured |
| cr09a19v33 | How true or false is each of the following statements for you: I seem to get sick a little easier than other people | directly measured |
| cr09a19v34 | How true or false is each of the following statements for you: I am as healthy as anybody I know | directly measured |
| cr09a19v35 | How true or false is each of the following statements for you: I expect my health to get worse | directly measured |
| cr09a19v36 | How true or false is each of the following statements for you: My health is excellent | directly measured |
| cr09a19s01 | General health scale | derived |
| cr09a19s02 | Physical function scale | derived |
| cr09a19s03 | Role functioning - physical scale | derived |
| cr09a19s04 | Bodily pain scale | derived |
| cr09a19s05 | Vitality scale | derived |
| cr09a19s06 | Social functioning scale | derived |
| cr09a19s07 | Role functioning - emotional scale | derived |
| cr09a19s08 | Mental health scale | derived |
| cr09a19s09 | Physical component summary scale | derived |
| cr09a19s10 | Mental component summary scale | derived |
| cr09a10v01 | During the past week: Did you urinate frequently during the day? | directly measured |
| cr09a10v02 | During the past week: Did you urinate frequently during the night? | directly measured |
| cr09a10v03 | During the past week: Did you have pain when you urinated? | directly measured |
| cr09a10v04 | During the past week: Did you have a bloated feeling in your abdomen? | directly measured |
| cr09a10v05 | During the past week: Did you have abdominal pain? | directly measured |
| cr09a10v06 | During the past week: Did you have pain in your buttocks? | directly measured |
| cr09a10v07 | During the past week: Did you suffer from gas (flatulence)? | directly measured |
| cr09a10v08 | During the past week: Did you have indigestions? | directly measured |
| cr09a10v09 | During the past week: Have you lost weight? | directly measured |
| cr09a10v10 | During the past week: Did you have a dry mouth? | directly measured |
| cr09a10v11 | During the past week: Have you had thin or dull hair because of your illness or treatment? | directly measured |
| cr09a10v12 | During the past week: Did food and drink taste different than usual? | directly measured |
| cr09a10v13 | During the past week: Have you felt physically less attractive as a result of your disease or treatment? | directly measured |
| cr09a10v14 | During the past week: Have you been feeling less feminine/masculine as a result of your disease or treatment? | directly measured |
| cr09a10v15 | During the past week: Have you been dissatisfied with your body? | directly measured |
| cr09a10v16 | During the past week: Were you worried about your health in the future? | directly measured |
| cr09a10v17 | To what extent were you interested in sex? | directly measured |
| cr09a10v18 | To what extent were you sexually active (with or without intercourse)? | directly measured |
| cr09a10v19 | Answer only if you were sexually active: To what extent was sex enjoyable for you? | directly measured |
| cr09a10v20 | Did you have difficulty getting an erection? | directly measured |
| cr09a10v21 | Did you have any trouble getting an ejaculation (e.g. so-called dry orgasm)? | directly measured |
| cr09a10v22 | Did you have a dry vagina during intercourse? | directly measured |
| cr09a10v23 | Did you have pain during intercourse? | directly measured |
| cr09a10v24 | Do you have a stoma bag? | directly measured |
| cr09a10v25 | During the past week: Have you had much defecation during the day? | directly measured |
| cr09a10v26 | During the past week: Have you had much defecation during the night? | directly measured |
| cr09a10v27 | During the past week: Have you had false urge (urge without defecation)? | directly measured |
| cr09a10v28 | During the past week: Have you had leakage of stools from your back passage? | directly measured |
| cr09a10v29 | During the past week: Have you had blood in your stools? | directly measured |
| cr09a10v30 | During the past week: Do you have difficulties with defecating? | directly measured |
| cr09a10v31 | During the past week: Do you have pain when defecating? | directly measured |
| cr09a10v32 | During the past week: Were you afraid that others might hear your stoma? | directly measured |
| cr09a10v33 | During the past week: Were you afraid that others could smell your stools? | directly measured |
| cr09a10v34 | During the past week: Did you worry about possible leakage of the stoma bag? | directly measured |
| cr09a10v35 | During the past week: Did you have problems caring for your stoma? | directly measured |
| cr09a10v36 | During the past week: Have you had sore skin around your stoma? | directly measured |
| cr09a10v37 | During the past week: Did you feel embarrassed because of your stoma? | directly measured |
| cr09a10v38 | During the past week: Have you felt less complete because of your stoma? | directly measured |
| cr09a10s01 | Body image scale | derived |
| cr09a10s02 | Future perspective scale | derived |
| cr09a10s03 | Sexual function scale | derived |
| cr09a10s04 | Sexual enjoyment scale | derived |
| cr09a10s05 | Micturition problem scale | derived |
| cr09a10s06 | Chemotherapy-related problems scale | derived |
| cr09a10s07 | Gastro-intestinal problems scale | derived |
| cr09a10s08 | Male-related sexual problems scale | derived |
| cr09a10s09 | Female-related sexual problems scale | derived |
| cr09a10s10 | Defecation problems scale | derived |
| cr09a10s11 | Stoma-related problems scale | derived |
| cr09a10s12 | Weight loss scale | derived |
| cr09a21v01 | I make contact easily when I meet people. | directly measured |
| cr09a21v02 | I often make a fuss about unimportant things. | directly measured |
| cr09a21v03 | I often talk to strangers. | directly measured |
| cr09a21v04 | I often feel unhappy. | directly measured |
| cr09a21v05 | I am often irritated. | directly measured |
| cr09a21v06 | I often feel inhibited in social interactions. | directly measured |
| cr09a21v07 | I take a gloomy view on things. | directly measured |
| cr09a21v08 | I find it hard to start a conversation. | directly measured |
| cr09a21v09 | I am often in a bad mood. | directly measured |
| cr09a21v10 | I am a closed kind of person. | directly measured |
| cr09a21v11 | I would rather keep other people at a distance. | directly measured |
| cr09a21v12 | I often find myself worrying about something. | directly measured |
| cr09a21v13 | I am often down in the dumps. | directly measured |
| cr09a21v14 | When socializing, I don’t find the right things to talk about. | directly measured |
| cr09a21s01 | Negative affect subscale | derived |
| cr09a21s02 | Social inhibition subscale | derived |
| cr09a21s03 | Type D personality scale | derived |
| cr09a22v01 | How much does your illness affect your life? | directly measured |
| cr09a22v02 | How long do you think your illness will continue? | directly measured |
| cr09a22v03 | How much control do you feel you have over your illness? | directly measured |
| cr09a22v04 | How much do you think your treatment can help your illness? | directly measured |
| cr09a22v05 | How much do you experience symptoms from your illness? | directly measured |
| cr09a22v06 | How concerned are you about your illness? | directly measured |
| cr09a22v07 | How well do you feel you understand your illness? | directly measured |
| cr09a22v08 | How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed? | directly measured |
| cr09a23v01 | I am bothered by fatigue | directly measured |
| cr09a23v02 | I get tired very quickly | directly measured |
| cr09a23v03 | I don’t do much during the day | directly measured |
| cr09a23v04 | I have enough energy for everyday life | directly measured |
| cr09a23v05 | Physically, I feel exhausted | directly measured |
| cr09a23v06 | I have problems starting things | directly measured |
| cr09a23v07 | I have problems thinking clearly | directly measured |
| cr09a23v08 | I feel no desire to do anything | directly measured |
| cr09a23v09 | Mentally, I feel exhausted | directly measured |
| cr09a23v10 | When I am doing something, I can concentrate quite well | directly measured |
| cr09a23s01 | FAS total score | derived |
| cr09a24v01 | I feel tense or 'wound up' | directly measured |
| cr09a24v02 | I still enjoy the things I used to enjoy | directly measured |
| cr09a24v03 | I get a sort of frightened feeling as if something awful is about to happen | directly measured |
| cr09a24v04 | I can laugh and see the funny side of things | directly measured |
| cr09a24v05 | Worrying thoughts go through my mind | directly measured |
| cr09a24v06 | I feel cheerful | directly measured |
| cr09a24v07 | I can sit at ease and feel relaxed | directly measured |
| cr09a24v08 | I feel as if I am slowed down | directly measured |
| cr09a24v09 | I get a sort of frightened feeling like 'butterflies' in the stomach | directly measured |
| cr09a24v10 | I have lost interest in my appearance | directly measured |
| cr09a24v11 | I feel restless, as if I have to be on the move | directly measured |
| cr09a24v12 | I look forward with enjoyment to things | directly measured |
| cr09a24v13 | I get sudden feelings of panic | directly measured |
| cr09a24v14 | I can enjoy a good book or radio or TV program | directly measured |
| cr09a24s01 | Anxiety total score | derived |
| cr09a24s02 | Depression total score | derived |
| cr09a25v01 | I learned something about life because of having had cancer | directly measured |
| cr09a25v02 | Having had cancer makes me feel unsure about my future | directly measured |
| cr09a25v03 | I worry about my future | directly measured |
| cr09a25v04 | I am afraid to die | directly measured |
| cr09a25v05 | I feel like time in my life is running out | directly measured |
| cr09a25v06 | Having had cancer has made me realize that time is precious | directly measured |
| cr09a25v07 | Having had cancer has strengthened my religious faith or my sense of spirituality | directly measured |
| cr09a25v08 | I do not take my body for granted since the cancer | directly measured |
| cr09a25v09 | Having had cancer has made me more concerned about my health | directly measured |
| cr09a25v10 | I am more aware of physical problems or changes in my body since having had cancer | directly measured |
| cr09a25v11 | I worry about my health | directly measured |
| cr09a25v12 | I worry about the cancer coming back or about getting another cancer | directly measured |
| cr09a25v13 | New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back | directly measured |
| cr09a25v14 | I am concerned that my energy has not returned to what it was before I had cancer | directly measured |
| cr09a25v15 | I am bothered that my body cannot do what it could before having had cancer | directly measured |
| cr09a25v16 | I worry about how my body looks | directly measured |
| cr09a25v17 | I feel disfigured | directly measured |
| cr09a25v18 | I sometimes wear clothing to cover up parts of my body I don’t want others to see | directly measured |
| cr09a25v19 | Having had cancer has made me take better care of myself (my health) | directly measured |
| cr09a25v20 | Having to pay attention to my physical health interferes with my life | directly measured |
| cr09a25v21 | I feel a sense of pride or accomplishment from surviving cancer | directly measured |
| cr09a25v22 | I learned something about myself because of having had cancer | directly measured |
| cr09a25v23 | I am angry about having had cancer | directly measured |
| cr09a25v24 | I feel guilty for somehow being responsible for getting cancer | directly measured |
| cr09a25v25 | I feel that I am a role model to other people with cancer | directly measured |
| cr09a25v26 | Having had cancer has made me feel old | directly measured |
| cr09a25v27 | I feel guilty today for not having been available to my family when I had cancer | directly measured |
| cr09a25v28 | Having had cancer has been the most difficult experience in my life | directly measured |
| cr09a25v29 | I wonder why I got cancer | directly measured |
| cr09a25v30 | It is important for me to know why I got cancer | directly measured |
| cr09a25v31 | Having had cancer turned into a reason to make changes in my life | directly measured |
| cr09a25v32 | Because of cancer I have become better about expressing what I want | directly measured |
| cr09a25v33 | Because of cancer I have more confidence in myself | directly measured |
| cr09a25v34 | Having had cancer has given me direction in life | directly measured |
| cr09a25v35 | I place a higher value on my relationships with family or friends than I did before having had cancer | directly measured |
| cr09a25v36 | I feel a special bond with people with cancer | directly measured |
| cr09a25v37 | Because I had cancer I am more understanding of what other people may feel when they are seriously ill | directly measured |
| cr09a25v38 | Having had cancer has made me more willing to help others | directly measured |
| cr09a25v39 | I feel that I should give something back to others because I survived cancer | directly measured |
| cr09a25v40 | Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family) | directly measured |
| cr09a25v41 | On-going cancer-related or treatment-related symptoms (for example bladder or bowel control, lymphedema, hair loss, scars, infertility, premature menopause, lack of energy, impotence/sexual problems, aches, pain or physical discomfort) interfere with my life | directly measured |
| cr09a25s01 | Physical: health awareness scale | derived |
| cr09a25s02 | Physical: body changes scale | derived |
| cr09a25s03 | Psychological: positive self-evaluation scale | derived |
| cr09a25s04 | Psychological: negative self-evaluation scale | derived |
| cr09a25s05 | Existential: positive outlook scale | derived |
| cr09a25s06 | Existential: negative outlook scale | derived |
| cr09a25s07 | Social: life interferences scale | derived |
| cr09a25s08 | Social: value of relationships scale | derived |
| cr09a25s09 | Meaning of cancer scale | derived |
| cr09a25s10 | Health worry scale | derived |
| cr09a25s11 | Positive higher order scale score | derived |
| cr09a25s12 | Negative higher order scale score | derived |
| cr09a26v01 | How much information have you received on: The diagnosis of your disease? | directly measured |
| cr09a26v02 | How much information have you received on: The extent (spread) of your disease? | directly measured |
| cr09a26v03 | How much information have you received on: The possible causes of your disease? | directly measured |
| cr09a26v04 | How much information have you received on: Whether the disease is under control? | directly measured |
| cr09a26v05 | How much information have you received on: The purpose of any medical tests you have had or may undergo? | directly measured |
| cr09a26v06 | How much information have you received on: The procedures of the medical tests? | directly measured |
| cr09a26v07 | How much information have you received on: The results of the medical tests you have already received? | directly measured |
| cr09a26v08 | How much information have you received on: The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
| cr09a26v09 | How much information have you received on: Non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)? | directly measured |
| cr09a26v10 | How much information have you received on: The expected benefit of the treatment? | directly measured |
| cr09a26v11 | How much information have you received on: The possible side-effects of your treatment? | directly measured |
| cr09a26v12 | How much information have you received on: The expected effects of the treatment on disease symptoms? | directly measured |
| cr09a26v13 | How much information have you received on: The effects of the treatment on social and family life? | directly measured |
| cr09a26v14 | How much information have you received on: The effects of the treatment on sexual activity? | directly measured |
| cr09a26v15 | How much information have you received on: Additional help outside the hospital (e.g. help with daily activities, self help groups, district nurses)? | directly measured |
| cr09a26v16 | How much information have you received on: Rehabilitation services (e. g. physiotherapy, occupational therapy)? | directly measured |
| cr09a26v17 | How much information have you received on: Aspects of managing your illness at home? | directly measured |
| cr09a26v18 | How much information have you received on: Possible professional psychological support? | directly measured |
| cr09a26v19 | How much information have you received on: Different places of care (hospitals/outpatient services/home)? | directly measured |
| cr09a26v20 | How much information have you received on: Things that you can do to help yourself get well (rest, contact with others..)? | directly measured |
| cr09a26v21 | Have you received written information? | directly measured |
| cr09a26v22 | Have you received information on CD or tape / video? | directly measured |
| cr09a26v23 | Were you satisfied with the amount of information you received? | directly measured |
| cr09a26v24 | Do you wish to receive more information? | directly measured |
| cr09a26v25 | Do you wish that you had received less information? | directly measured |
| cr09a26v26 | Overall has the information you have received been helpful? | directly measured |
| cr09a26v27 | Do you use the internet? | directly measured |
| cr09a26v28 | Did you use the internet to find information about colon cancer? | directly measured |
| cr09a26s01 | Information on your disease scale | derived |
| cr09a26s02 | Information on your medical tests scale | derived |
| cr09a26s03 | Information on treatment/your treatments scale | derived |
| cr09a26s04 | Information on other services scale | derived |
| cr09a26s05 | Information on other areas/places of care scale | derived |
| cr09a26s06 | Information on things patient can do to get well scale | derived |
| cr09a26s07 | Written information scale | derived |
| cr09a26s08 | Information on cd, tape, video scale | derived |
| cr09a26s09 | Satisfaction with information scale | derived |
| cr09a26s10 | Desire to receive more information scale | derived |
| cr09a26s11 | Desire to receive less information scale | derived |
| cr09a26s12 | Helpfulness of information scale | derived |
Questions
Questionnaire: Quality of life colon/rectal cancer
The questionnaire was originally conducted in Dutch.
Browse Quality of life colon/rectal cancerResponse Information
Response Overview
The questionnaire was submitted to 1682 patients of 18 years and older. 1371 patients completed the questionnaire (reponse rate 82%).
De vragenlijst is voorgelegd aan 1682 panelleden van 18 jaar en ouder, waarvan 1371 de vragenlijst compleet invulden (responspercentage 82%).
Collection Events
Period
01-01-2009 to 30-06-2009
Sample
Patients diagnosed with colon or rectal cancer between 1998 and 2007 in the southern region of the Netherlands
Collection Mode
internet survey
Fieldwork Note
A reminder was sent once to non-respondents.
Publications
Type D (distressed) personality is associated with poor quality of life and mental health among 3080 cancer survivors Journal of Affective Disorders; Floortje Mols
et al.
Impact of chemotherapy on health status and symptom burden of colon cancer survivors: A population-based study European Journal of Cancer; Melissa S.Y. Thong
et al.
Impact of preoperative radiotherapy on general and disease-specific health status of rectal cancer survivors: a population-based study International Journal of Radiation Oncology *Biology *Physics; Melissa S.Y. Thong
et al.
Socio-economic implications of cancer survivorship: Results from the PROFILES registry European Journal of Cancer; Floortje Mols
et al.
Type D personality is associated with increased comorbidity burden and health care utilization among 3080 cancer survivors General Hospital Psychiatry; Floortje Mols
et al.
Excess weight among colorectal cancer survivors: target for intervention Journal of gastroenterology; I. Soerjomataram
et al.
Multiple primary cancer survivors have poorer health status and well-being than single primary cancer survivors: a study from the population-based PROFILES registry Psycho-Oncology; Melissa S.Y. Thong
et al.
Illness perceptions in cancer survivors: What is the role of information provision? Psycho-Oncology; Olga Husson
et al.
Quantifying fatigue in (long-term) colorectal cancer cancer survivors: a study from the population-based PROFILES registry European Journal of Cancer; Melissa S.Y. Thong
et al.
Information Provision and Patient Reported Outcomes in Patients with Metastasized Colorectal Cancer: Results from the PROFILES Registry JOURNAL OF PALLIATIVE MEDICINE; Olga Husson
et al.
Low socioeconomic status and mental health outcomes in colorectal cancer survivors: disadvantage? advantage? … or both? Psychooncology; Andrykowski, M.A.
et al.
Quality of life of older rectal cancer patients is not impaired by a permanent stoma European Journal of Surgical Oncology (EJSO); Orsini, RG
et al.
Low subjective health literacy is associated with adverse health behaviors and worse health-related quality of life among colorectal cancer survivors: results from the PROFILES registry Psycho-Oncology; O. Husson
et al.
Symptoms of anxiety and depression are associated with satisfaction with information provision and internet use among 3080 cancer survivors: results of the PROFILES registry Cancer Nursing; Nienke Beekers
et al.
The individual and combined effect of colorectal cancer and diabetes on health-related quality of life and sexual functioning: result from the PROFILES registry Support Care Cancer; Pauline A.J. Vissers
et al.
Living with the physical and mental consequences of an ostomy: a study among 1–10-year rectal cancer survivors from the population-based PROFILES registry Psycho-Oncology; Floortje Mols
et al.
Chemotherapy-induced neuropathy and its association with quality of life among 2- to 11-year colorectal cancer survivors: results from the population-based PROFILES registry Journal of Clinical Oncology; F. Mols
et al.
Depressive symptoms are a risk factor for all-cause mortality: results from a prospective population-based study among 3,080 cancer survivors from the PROFILES registry Journal of Cancer Survivors; F. Mols
et al.
Variation in fatigue among 6011 (long-term) cancer survivors and a normative population: a study from the population-based PROFILES registry. Support Cancer Care; Husson O
et al.
Does fear of cancer recurrence differ between cancer types? A study from the population-based PROFILES registry. Psycho-oncology; van de Wal M.
et al.
Utilization of supportive care by survivors of colorectal cancer: results from the PROFILES registry. Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer; Holla J.F.
et al.