Single Wave Study
General Information
Title
Quality of life prostate cancer 2011/2012
Project Number
8.1
Longitudinal Type
Single Wave Study
Begin date
01-10-2011
End date
30-10-2012
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 |
|---|---|---|
| pr11a01pat_id | Patient identifier | preloaded |
| pr11a01response | Response status | derived |
| pr11a01stage | Stage | preloaded |
| pr11a01grade | Tumor differentiation | preloaded |
| pr11a01gleason | Gleason score | preloaded |
| pr11a01ageinc | Age category at time of diagnosis | constructed |
| pr11a01ageques | Age category at time of questionnaire | constructed |
| pr11a01yrsdiag | Time since diagnosis in categories | constructed |
| pr11a01BMI | Body mass index | constructed |
| pr11a01prost | Prostatectomy | preloaded |
| pr11a01ebrt | External beam radiotherapy | preloaded |
| pr11a01horm | Hormonal therapy | preloaded |
| pr11a01brach | Brachytherapie | preloaded |
| pr11a01ww | Watchful waiting/active surveillance | preloaded |
| pr11a01turp | TURP therapy | preloaded |
| pr11a01other | Therapy unknown | preloaded |
| pr11a01gend | Gender | preloaded |
| pr11a02q01 | What is currently your marital status? | directly measured |
| pr11a02q02 | What is the highest education level that you have completed? | directly measured |
| pr11a06q01 | Do you have a paid job at this moment? | directly measured |
| pr11a06q02 | Hours/week working as employee | directly measured |
| pr11a06q03 | Hours/week working as entrepeneur | directly measured |
| pr11a06q04 | How many weeks were you unable to work due to cancer? | directly measured |
| pr11a06q05 | Number of weeks unable to work | directly measured |
| pr11a06q07a | Which changes have you experienced in your work situation due to cancer? Not applicable | directly measured |
| pr11a06q07b | Which changes have you experienced in your work situation due to cancer? Nothing has changed in my work situation due to cancer | directly measured |
| pr11a06q07c | Which changes have you experienced in your work situation due to cancer? I have been retrained due to cancer | directly measured |
| pr11a06q07d | Which changes have you experienced in your work situation due to cancer? I got another job due to cancer | directly measured |
| pr11a06q07e | Which changes have you experienced in your work situation due to cancer? I have quit working due to cancer | directly measured |
| pr11a06q07f | Which changes have you experienced in your work situation due to cancer? I am working more hours due to cancer | directly measured |
| pr11a06q07g | Which changes have you experienced in your work situation due to cancer? I am working less hours due to cancer | directly measured |
| pr11a06q07h | Which changes have you experienced in your work situation due to cancer? I am disabled due to cancer | directly measured |
| pr11a06q07i | Which changes have you experienced in your work situation due to cancer? I have retired early | directly measured |
| pr11a06q07j | Which changes have you experienced in your work situation due to cancer? I have been fired due to cancer | directly measured |
| pr11a06q07f1 | More hours working due to cancer | directly measured |
| pr11a06q07g1 | Less hours working due to cancer | directly measured |
| pr11a06q06 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| pr11a06q06a | Since which year did you not have a paid job? (pension/early retirement, unemployed, disabled) | directly measured |
| pr11a06q06b | Since which month did you not have a paid job? (pension/early retirement, unemployed, disabled) | directly measured |
| pr11a06q08 | Disability percentage | directly measured |
| pr11a06q09 | Disabled due to cancer | directly measured |
| pr11a03q01 | Do you smoke? | directly measured |
| pr11a03q02 | How long has it been since you've quit smoking? | directly measured |
| pr11a03q03 | Number of cigarettes a day | directly measured |
| pr11a03q04 | Number of cigars a day | directly measured |
| pr11a03q05 | Number of packages of pipe tabacco a week | directly measured |
| pr11a03q06 | Can you state how many glasses of alcoholic beverages you drank on average per week in de past 12 months? | directly measured |
| pr11a03q07 | How long has it been since you've quit drinking alcohol? | directly measured |
| pr11a03q08 | Number of glasses of beer per week | directly measured |
| pr11a03q09 | Number of glasses of wine or port wine per week | directly measured |
| pr11a03q10 | Number of glasses of liquor per week | directly measured |
| pr11a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| pr11a05q02 | How many of these contact moments with your general practitioner had to do with cancer or the aftermath of cancer? | directly measured |
| pr11a05q03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| pr11a05q04 | How many of these contact moments with your specialist had to do with cancer or the aftermath of cancer? | directly measured |
| pr11a05q05 | Do you still have follow up appointments? | directly measured |
| pr11a05q06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| pr11a05q07 | Do you feel comfortable with this follow up scheme? | directly measured |
| pr11a05q08 | Did you receive care after the treatment of your illness? | directly measured |
| pr11a05q09 | Did you receive care after the treatment of your illness from a psychologist? | directly measured |
| pr11a05q10 | Did you receive care after the treatment of your illness from a sexologist? | directly measured |
| pr11a05q11 | Did you receive care after the treatment of your illness from a social worker? | directly measured |
| pr11a05q12 | Did you receive care after the treatment of your illness from a pastoral worker? | directly measured |
| pr11a05q13 | Did you receive care after the treatment of your illness from a general practitioner? | directly measured |
| pr11a05q14 | Did you receive care after the treatment of your illness from a dietist? | directly measured |
| pr11a05q15 | Did you receive care after the treatment of your illness from a physiotherapist? | directly measured |
| pr11a05q16 | Did you receive care after the treatment of your illness from a recovery and balance program? | directly measured |
| pr11a05q17 | Did you receive care after the treatment of your illness from creative therapy? | directly measured |
| pr11a05q18 | Did you receive care after the treatment of your illness from a oncological nurse? | directly measured |
| pr11a05q19 | Did you receive care after the treatment of your illness from a peer group? | directly measured |
| pr11a05q20 | Did you receive care after the treatment of your illness from home care? | directly measured |
| pr11a07q01 | Do you have now, or did you have in the past 12 months: heart condition | directly measured |
| pr11a07q04 | Do you have now, or did you have in the past 12 months: stroke | directly measured |
| pr11a07q07 | Do you have now, or did you have in the past 12 months: high blood pressure | directly measured |
| pr11a07q10 | Do you have now, or did you have in the past 12 months: asthma, chronic bronchitis, COPD | directly measured |
| pr11a07q13 | Do you have now, or did you have in the past 12 months: diabetes | directly measured |
| pr11a07q16 | Do you have now, or did you have in the past 12 months: ulcer | directly measured |
| pr11a07q19 | Do you have now, or did you have in the past 12 months: kidney disease | directly measured |
| pr11a07q22 | Do you have now, or did you have in the past 12 months: liver disease | directly measured |
| pr11a07q25 | Do you have now, or did you have in the past 12 months: anemia or other blood condition | directly measured |
| pr11a07q28 | Do you have now, or did you have in the past 12 months: thyroid disease | directly measured |
| pr11a07q31 | Do you have now, or did you have in the past 12 months: depression | directly measured |
| pr11a07q34 | Do you have now, or did you have in the past 12 months: arthritis | directly measured |
| pr11a07q37 | Do you have now, or did you have in the past 12 months: backache | directly measured |
| pr11a07q40 | Do you have now, or did you have in the past 12 months: rheumatism | directly measured |
| pr11a07q02 | Are you being treated for: heart condition | directly measured |
| pr11a07q05 | Are you being treated for: stroke | directly measured |
| pr11a07q08 | Are you being treated for: high blood pressure | directly measured |
| pr11a07q11 | Are you being treated for: asthma, chronic bronchitis, COPD | directly measured |
| pr11a07q14 | Are you being treated for: diabetes | directly measured |
| pr11a07q17 | Are you being treated for: ulcer | directly measured |
| pr11a07q20 | Are you being treated for: kidney disease | directly measured |
| pr11a07q23 | Are you being treated for: liver disease | directly measured |
| pr11a07q26 | Are you being treated for: anemia or other blood condition | directly measured |
| pr11a07q29 | Are you being treated for: thyroid disease | directly measured |
| pr11a07q32 | Are you being treated for: depression | directly measured |
| pr11a07q35 | Are you being treated for: arthritis | directly measured |
| pr11a07q38 | Are you being treated for: backache | directly measured |
| pr11a07q41 | Are you being treated for: rheumatism | directly measured |
| pr11a07q03 | Does the condition interfere with your activities: heart condtion | directly measured |
| pr11a07q06 | Does the condition interfere with your activities: stroke | directly measured |
| pr11a07q09 | Does the condition interfere with your activities: high blood pressure | directly measured |
| pr11a07q12 | Does the condition interfere with your activities: asthma, chronic bronchitis, COPD | directly measured |
| pr11a07q15 | Does the condition interfere with your activities: diabetes | directly measured |
| pr11a07q18 | Does the condition interfere with your activities: ulcer | directly measured |
| pr11a07q21 | Does the condition interfere with your activities: kidney disease | directly measured |
| pr11a07q24 | Does the condition interfere with your activities: liver disease | directly measured |
| pr11a07q27 | Does the condition interfere with your activities: anemia or other blood condition | directly measured |
| pr11a07q30 | Does the condition interfere with your activities: thyroid disease | directly measured |
| pr11a07q33 | Does the condition interfere with your activities: depression | directly measured |
| pr11a07q36 | Does the condition interfere with your activities: arthritis | directly measured |
| pr11a07q39 | Does the condition interfere with your activities: backache | directly measured |
| pr11a07q42 | Does the condition interfere with your activities: rheumatism | directly measured |
| pr11a09q01 | Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase? | directly measured |
| pr11a09q02 | Do you have any trouble taking a long walk? | directly measured |
| pr11a09q03 | Do you have any trouble taking a short walk outside of the house? | directly measured |
| pr11a09q04 | Do you need to stay in bed or a chair during the day? | directly measured |
| pr11a09q05 | Do you need help with eating, dressing, washing yourself or using the toilet? | directly measured |
| pr11a09q06 | Were you limited in doing either your work or other daily activities? | directly measured |
| pr11a09q07 | Were you limited in pursuing your hobbies or other leisure time activities? | directly measured |
| pr11a09q08 | Were you short of breath? | directly measured |
| pr11a09q09 | Have you had pain? | directly measured |
| pr11a09q10 | Did you need to rest? | directly measured |
| pr11a09q11 | Have you had trouble sleeping? | directly measured |
| pr11a09q12 | Have you felt weak? | directly measured |
| pr11a09q13 | Have you lacked appetite? | directly measured |
| pr11a09q14 | Have you felt nauseated? | directly measured |
| pr11a09q15 | Have you vomited? | directly measured |
| pr11a09q16 | Have you been constipated? | directly measured |
| pr11a09q17 | Have you had diarrhea? | directly measured |
| pr11a09q18 | Were you tired? | directly measured |
| pr11a09q19 | Did pain interfere with your daily activities? | directly measured |
| pr11a09q20 | Have you had difficulty in concentrating on things, like reading a newspaper or watching television? | directly measured |
| pr11a09q21 | Did you feel tense? | directly measured |
| pr11a09q22 | Did you worry? | directly measured |
| pr11a09q23 | Did you feel irritable? | directly measured |
| pr11a09q24 | Did you feel depressed? | directly measured |
| pr11a09q25 | Have you had difficulty remembering things? | directly measured |
| pr11a09q26 | Has your physical condition or medical treatment interfered with your family life? | directly measured |
| pr11a09q27 | Has your physical condition or medical treatment interfered with your social activities? | directly measured |
| pr11a09q28 | Has your physical condition or medical treatment caused you financial difficulties during the past week? | directly measured |
| pr11a09q29 | How would you rate your overall health during the past week? | directly measured |
| pr11a09q30 | How would you rate your overall quality of life during the past week? | directly measured |
| pr11a09s01 | Global Health scale | derived |
| pr11a09s02 | Physical Functioning scale | derived |
| pr11a09s03 | Role Functioning scale | derived |
| pr11a09s04 | Emotional Functioning scale | derived |
| pr11a09s05 | Cognitive Functioning scale | derived |
| pr11a09s06 | Social Functioning scale | derived |
| pr11a09s07 | Fatigue scale | derived |
| pr11a09s08 | Nausea scale | derived |
| pr11a09s09 | Pain scale | derived |
| pr11a09s10 | Dyspnoea scale | derived |
| pr11a09s11 | Insomnia scale | derived |
| pr11a09s12 | Appetite scale | derived |
| pr11a09s13 | Constipation scale | derived |
| pr11a09s14 | Diarrhoea scale | derived |
| pr11a09s15 | Financial scale | derived |
| pr11a15q01 | During the past week: Have you had to urinate frequently during the day? | directly measured |
| pr11a15q02 | During the past week: Have you had to urinate frequently at night? | directly measured |
| pr11a15q03 | During the past week: When you felt the urge to pass urine, did you have to hurry to get to the toilet? | directly measured |
| pr11a15q04 | During the past week: Was it difficult for you to get enough sleep, because you needed to get up frequently at night to urinate? | directly measured |
| pr11a15q05 | During the past week: Have you had difficulty going out of the house because you needed to be close to a toilet? | directly measured |
| pr11a15q06 | During the past week: Have you had any unintentional release (leakage) of urine? | directly measured |
| pr11a15q07 | During the past week: Did you have pain when you urinated? | directly measured |
| pr11a15q08 | During the past week: Has wearing an incontinence aid been a problem for you? | directly measured |
| pr11a15q09 | During the past week: Have your daily activities been limited by your urinary problems? | directly measured |
| pr11a15q10 | During the past week: Have your daily activities been limited by your bowel problems? | directly measured |
| pr11a15q11 | During the past week: Have you had any unintentional release (leakage) of stools? | directly measured |
| pr11a15q12 | During the past week: Have you had blood in your stools? | directly measured |
| pr11a15q13 | During the past week: Did you have a bloated feeling in your abdomen? | directly measured |
| pr11a15q14 | During the past week: Did you have hot flushes? | directly measured |
| pr11a15q15 | During the past week: Have you had sore or enlarged nipples or breasts? | directly measured |
| pr11a15q16 | During the past week: Have you had swelling in your legs or ankles? | directly measured |
| pr11a15q17 | During the last 4 weeks: Has weight loss been a problem for you? | directly measured |
| pr11a15q18 | During the last 4 weeks: Has weight gain been a problem for you? | directly measured |
| pr11a15q19 | During the last 4 weeks: Have you felt less masculine as a result of your illness or treatment? | directly measured |
| pr11a15q20 | During the last 4 weeks: To what extent were you interested in sex? | directly measured |
| pr11a15q21 | During the last 4 weeks: To what extent were you sexually active (with or without intercourse)? | directly measured |
| pr11a15q22 | To what extent was sex enjoyable for you? | directly measured |
| pr11a15q23 | Did you have difficulty getting or maintaining an erection? | directly measured |
| pr11a15q24 | Did you have ejaculation problems (eg dry ejaculation)? | directly measured |
| pr11a15q25 | Have you felt uncomfortable about being sexually intimate? | directly measured |
| pr11a02q04 | Do you take medications for the prostate cancer? | directly measured |
| pr11a44q01 | My health, at present, depends on my medicines | directly measured |
| pr11a44q02 | Having to take medicines worries me | directly measured |
| pr11a44q03 | My life would be impossible without my medicines | directly measured |
| pr11a44q04 | I sometimes worry about the long-term effects of my medicines | directly measured |
| pr11a44q05 | Without my medicines I would become very ill | directly measured |
| pr11a44q06 | My medicines are no mystery to me | directly measured |
| pr11a44q07 | My health in the future will depend on my medicines | directly measured |
| pr11a44q08 | My medicines disrupt my life | directly measured |
| pr11a44q09 | I sometimes worry about becoming too dependent on my medicines | directly measured |
| pr11a44q10 | My medicines protect me from becoming worse | directly measured |
| pr11a44q11 | These medicines have unpleasant side effects | directly measured |
| pr11a08q01 | I forget to take my medicines | directly measured |
| pr11a08q02 | I alter the dose of my medicines | directly measured |
| pr11a08q03 | I stop taking my medicines for a while | directly measured |
| pr11a08q04 | I decide to miss out a dose | directly measured |
| pr11a08q05 | I take less than instructed | directly measured |
| pr11a22q01 | How much does your illness affect your life? | directly measured |
| pr11a22q02 | How long do you think your illness will continue? | directly measured |
| pr11a22q03 | How much control do you feel you have over your illness? | directly measured |
| pr11a22q04 | How much do you think your treatment can help your illness? | directly measured |
| pr11a22q05 | How much do you experience symptoms from your illness? | directly measured |
| pr11a22q06 | How concerned are you about your illness? | directly measured |
| pr11a22q07 | How well do you feel you understand your illness? | directly measured |
| pr11a22q08 | How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed? | directly measured |
| pr11a26q01 | The diagnosis of your disease? | directly measured |
| pr11a26q02 | The extent (spread) of your disease? | directly measured |
| pr11a26q03 | The possible causes of your disease? | directly measured |
| pr11a26q04 | Whether the disease is under control? | directly measured |
| pr11a26q05 | The purpose of any medical tests you have had or may undergo? | directly measured |
| pr11a26q06 | The procedures of the medical tests? | directly measured |
| pr11a26q07 | The results of the medical tests you have already received? | directly measured |
| pr11a26q08 | The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
| pr11a26q09 | The expected benefit of the treatment? | directly measured |
| pr11a26q10 | The possible side-effects of your treatment? | directly measured |
| pr11a26q11 | The expected effects of the treatment on disease symptoms? | directly measured |
| pr11a26q12 | The effects of the treatment on social and family life? | directly measured |
| pr11a26q13 | The effects of the treatment on sexual activity? | directly measured |
| pr11a26q14 | Additional help outside the hospital (e.g. help with daily activities, self help groups, district nurses)? | directly measured |
| pr11a26q15 | Rehabilitation services (e. g. physiotherapy, occupational therapy)? | directly measured |
| pr11a26q16 | Aspects of managing your illness at home? | directly measured |
| pr11a26q17 | Possible professional psychological support? | directly measured |
| pr11a26q18 | Different places of care (hospitals/outpatient services/home)? | directly measured |
| pr11a26q19 | Things that you can do to help yourself get well (rest, contact with others..)? | directly measured |
| pr11a26q20 | Have you received written information? | directly measured |
| pr11a26q21 | Have you received information on CD or tape / video? | directly measured |
| pr11a26q22 | Were you satisfied with the amount of information you received? | directly measured |
| pr11a26q23a | Do you wish to receive more information? | directly measured |
| pr11a26q24a | Do you wish that you had received less information? | directly measured |
| pr11a26q25 | Overall has the information you have received been helpful? | directly measured |
| pr11a27q01 | Do you use the internet? | directly measured |
| pr11a27q02 | Did you use the internet to find information about prostate cancer? | directly measured |
| pr11a26s01 | Information about the disease | derived |
| pr11a26s02 | Information about medical tests | derived |
| pr11a26s03 | Information about treatments | derived |
| pr11a26s04 | Information about other services | derived |
| pr11a26s05 | Information about other areas/places of care | derived |
| pr11a26s06 | Information about things to do | derived |
| pr11a26s07 | Information about written information | derived |
| pr11a26s08 | Information on CD, tape or video | derived |
| pr11a26s09 | Satisfaction with the information received | derived |
| pr11a26s11 | Information about helpfulness | derived |
| pr11a41q01 | Which statement about information provision suits best to you? | directly measured |
| pr11a41q02 | How much information do you want? | directly measured |
| pr11a41q03 | Which statement about decision making suits best to you? | directly measured |
| pr11a41q04 | Which treatment was recommended by your doctor? Surgery (radical prostatectomy) | directly measured |
| pr11a41q05 | Which treatment was recommended by your doctor? Brachytherapy | directly measured |
| pr11a41q06 | Which treatment was recommended by your doctor? External beam radiotherapy | directly measured |
| pr11a41q07 | Which treatment was recommended by your doctor? Watchful waiting/active surveillance | directly measured |
| pr11a41q08 | Which treatment was recommended by your doctor? Hormonal therapy | directly measured |
| pr11a41q09 | Which treatment was recommended by your doctor? Other | directly measured |
| pr11a41q11 | Which treatment did you finally chosen? Surgery (radical prostatectomy) | directly measured |
| pr11a41q12 | Which treatment did you finally chosen? Brachytherapy | directly measured |
| pr11a41q13 | Which treatment did you finally chosen? External beam radiotherapy | directly measured |
| pr11a41q14 | Which treatment did you finally chosen? Watchful waiting/active surveillance | directly measured |
| pr11a41q15 | Which treatment did you finally chosen? Hormonal therapy | directly measured |
| pr11a41q16 | Which treatment did you finally chosen? Other | directly measured |
Questions
Questionnaire: Quality of life prostate cancer
The questionnaire was originally conducted in Dutch.
Browse Quality of life prostate cancerResponse Information
Response Overview
The questionnaire was submitted to 1050 patients of 18 years and older. 695 patients completed the questionnaire (reponse rate 70%).Collection Events
Period
01-10-2011 to 31-10-2012
Sample
Patients diagnosed with prostate cancer between 2006 and 2009 in the southern region of the Netherlands
Collection Mode
mixed-mode survey
Fieldwork Note
A reminder was sent once to non-respondents.