Single Wave Study
General Information
Title
Quality of life prostate cancer 2004
Project Number
8.0
Longitudinal Type
Single Wave Study
Begin date
01-11-2004
End date
31-05-2005
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 |
|---|---|---|
| pr04a01pat_id | Patient identifier | preloaded |
| pr04a01response | Response status | derived |
| pr04a01gend | Gender | preloaded |
| pr04a01catageinc | Age category at time of diagnosis | constructed |
| pr04a01catageques | Age category at time of questionnaire | constructed |
| pr04a01timediag | Time passed since diagnosis | constructed |
| pr04a01stage | Stage | preloaded |
| pr04a01grade | Differentiation grade | preloaded |
| pr04a01prost | Prostatectomy | preloaded |
| pr04a01radioth | External beam radiotherapy | preloaded |
| pr04a01horm | Hormonal therapy | preloaded |
| pr04a01ther_no | Watchful waiting/active surveillance | preloaded |
| pr04a01ther_oth | Other therapy | preloaded |
| pr04a01turp | TURP therapy | preloaded |
| pr04a01unknown | Therapy unknown | preloaded |
| pr04a01ses | SES status in 3(4) categories | preloaded |
| pr04a02q01 | What is currently your marital status? | directly measured |
| pr04a02q02 | Do you currently have a steady partner? | directly measured |
| pr04a02q03 | Do you have children? | directly measured |
| pr04a02q04 | Do you live in the same house with your child(ren)? | directly measured |
| pr04a02q05 | Did cancer have negative influences on your relationship with your (former) partner? | directly measured |
| pr04a02q06 | Indicate below which is your highest education level. | directly measured |
| pr04a06q01 | I have no job | directly measured |
| pr04a06q02 | I am looking for a job | directly measured |
| pr04a06q03 | I am a student | directly measured |
| pr04a06q04 | I am a housewife/man | directly measured |
| pr04a06q05 | I am disabled | directly measured |
| pr04a06q06 | I am retired | directly measured |
| pr04a06q07 | I work 1-16 hours a week | directly measured |
| pr04a06q08 | I work 17-32 hours a week | directly measured |
| pr04a06q09 | I work 33-40 hours a week | directly measured |
| pr04a06q10 | I work more than 40 hours a week | directly measured |
| pr04a06q11 | Nothing has changed in my work situation due to cancer | directly measured |
| pr04a06q12 | I have been retrained due to cancer | directly measured |
| pr04a06q13 | I have quit working due to cancer | directly measured |
| pr04a06q14 | I am working more hours due to cancer | directly measured |
| pr04a06q15 | I am working less hours due to cancer | directly measured |
| pr04a06q16 | I am disabled due to cancer | directly measured |
| pr04a06q17 | I have retired early | directly measured |
| pr04a06q18 | I have been fired due to cancer | directly measured |
| pr04a06q19 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| pr04a06q20 | Have you experienced problems with getting life insurance, because of cancer? | directly measured |
| pr04a06q21 | Have you experienced problems with getting mortgage, because of cancer? | directly measured |
| pr04a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| pr04a05q02 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| pr04a05q03 | How many of these contact moments had to do with your cancer or the aftermath of your cancer? | directly measured |
| pr04a05q04 | Do you still have follow up appointments? | directly measured |
| pr04a05q05 | In general, how do or did you feel about the follow up appointments? | directly measured |
| pr04a05q06 | Did you want extra care after the treatment of your prostate cancer? | directly measured |
| pr04a05q07 | Did you receive care after the treatment of your illness? | directly measured |
| pr04a05q08 | Did you get the extra care from a psychologist? | directly measured |
| pr04a05q09 | Did you get the extra care from a sexologist? | directly measured |
| pr04a05q10 | Did you get the extra care from a social worker? | directly measured |
| pr04a05q11 | Did you get the extra care from pastoral care? | directly measured |
| pr04a05q12 | Did you get the extra care from a general practitioner? | directly measured |
| pr04a05q13 | Did you get the extra care from a dietist? | directly measured |
| pr04a05q14 | Did you get the extra care from a physiotherapist? | directly measured |
| pr04a05q15 | Did you get the extra care from a recovery program? | directly measured |
| pr04a05q16 | Did you get the extra care from creative therapy? | directly measured |
| pr04a05q17 | Did you get the extra care from a oncological nurse? | directly measured |
| pr04a05q18 | Did you get the extra care from a peer group? | directly measured |
| pr04a05q19 | How was the aftercare of your illness in general? | directly measured |
| pr04a05q20 | What do you think, in general, of the healthcare that you received from the moment you were diagnosed with cancer up to today? | directly measured |
| pr04a32q01 | Do you currently suffer much from your illness? | directly measured |
| pr04a07q01 | Do you have or have you had asthma, chronic bronchitis or COPD in the past 12 months? | directly measured |
| pr04a07q02 | Do you have or have you had a heart condition in the past 12 months? | directly measured |
| pr04a07q03 | Do you have or have you had high blood pressure in the past 12 months? | directly measured |
| pr04a07q04 | Do you have or have you had a stroke in the past 12 months? | directly measured |
| pr04a07q05 | Do you have or have you had a kidney disease in the past 12 months? | directly measured |
| pr04a07q06 | Do you have or have you had diabetes in the past 12 months? | directly measured |
| pr04a07q07 | Do you have or have you had malignancies in the past 12 months? | directly measured |
| pr04a07q08 | Do you have or have you had arthritis in the past 12 months? | directly measured |
| pr04a07q09 | Do you have or have you had a skin condition in the past 12 months? | directly measured |
| pr04a07q10 | Do you have or have you had a liver disease in the past 12 months? | directly measured |
| pr04a07q11 | Do you have or have you had a thyroid disease in the past 12 months? | directly measured |
| pr04a07q12 | I have had another disease / condition | directly measured |
| pr04a07q13 | I don\'t have any of these diseases / conditions | directly measured |
| pr04a07q14 | Do you use medication for the disease(s) that you have indicated in the previous question? | directly measured |
| pr04a19q01 | In general, would you say your health is | directly measured |
| pr04a19q02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
| pr04a19q03 | Does your health now limit you in doing vigorous activities, such as running, lifting heavy objects, participating in strenuous sports ming? | directly measured |
| pr04a19q04 | Does your health now limit you in doing moderate activities, such as moving a table, pushing a vacuum cleaner or swimming? | directly measured |
| pr04a19q05 | Does your health now limit you in lifting or carrying groceries? | directly measured |
| pr04a19q06 | Does your health now limit you in climbing several flights of stairs? | directly measured |
| pr04a19q07 | Does your health now limit you in climbing one flight of stairs? | directly measured |
| pr04a19q08 | Does your health now limit you in bending, kneeling or stooping? | directly measured |
| pr04a19q09 | Does your health now limit you in walking more than a mile? | directly measured |
| pr04a19q10 | Does your health now limit you in walking several blocks? | directly measured |
| pr04a19q11 | Does your health now limit you in walking one block? | directly measured |
| pr04a19q12 | Does your health now limit you in bathing or dressing yourself | directly measured |
| pr04a19q13 | During the past 4 weeks, have you cut down on the amount of time you spent on work or other activites as a result of your physical health? | directly measured |
| pr04a19q14 | During the past 4 weeks, have you accomplished less than you would like as a result of your physical health? | directly measured |
| pr04a19q15 | During the past 4 weeks, were you limited in the kind of work or other activities as a result of your physical health? | directly measured |
| pr04a19q16 | During the past 4 weeks, have you had difficulty performing the work or other activities (for example, it took extra effort) as a result of your physical health? | directly measured |
| pr04a19q17 | During the past 4 weeks, have you cut down on the amount of time you spent on work or other activites as a result of any emotional problems? | directly measured |
| pr04a19q18 | During the past 4 weeks, have you accomplished less than you would like as a result of any emotional problems? | directly measured |
| pr04a19q19 | During the past 4 weeks, didn't you do work or other activities as carefully as usual as a result of any emotional problems? | directly measured |
| pr04a19q20 | 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 |
| pr04a19q21 | How much physical pain have you had during the past 4 weeks? | directly measured |
| pr04a19q22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
| pr04a19q23 | How much of the time during the past 4 weeks did you feel full of pep? | directly measured |
| pr04a19q24 | How much of the time during the past 4 weeks have you been a very nervous person? | directly measured |
| pr04a19q25 | 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 |
| pr04a19q26 | How much of the time during the past 4 weeks have you felt calm and peaceful? | directly measured |
| pr04a19q27 | How much of the time during the past 4 weeks did you have a lot of energy? | directly measured |
| pr04a19q28 | How much of the time during the past 4 weeks have you felt downhearted and blue? | directly measured |
| pr04a19q29 | How much of the time during the past 4 weeks did you feel worn ot? | directly measured |
| pr04a19q30 | How much of the time during the past 4 weeks have you been a happy person? | directly measured |
| pr04a19q31 | How much of the time during the past 4 weeks did you feel tired? | directly measured |
| pr04a19q32 | 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 |
| pr04a19q33 | I seem to get sick a little easier than other people | directly measured |
| pr04a19q34 | I am as healthy as anybody I know | directly measured |
| pr04a19q35 | I expect my health to get worse | directly measured |
| pr04a19q36 | My health is excellent | directly measured |
| pr04a19s01 | General health | derived |
| pr04a19s02 | Physical function | derived |
| pr04a19s03 | Role functioning – physical | derived |
| pr04a19s04 | Bodily pain | derived |
| pr04a19s05 | Vitality / fatigue | derived |
| pr04a19s06 | Social functioning | derived |
| pr04a19s07 | Role functioning – emotional | derived |
| pr04a19s08 | Mental health / well being | derived |
| pr04a19s09 | Physical component summary | derived |
| pr04a19s10 | Mental component summary | derived |
| pr04a33q01 | To what extent is fatigue a problem for you? | directly measured |
| pr04a33q02 | To what extent are appetite changes a problem for you? | directly measured |
| pr04a33q03 | To what extent are aches or pain a problem for you? | directly measured |
| pr04a33q04 | To what extent are sleep changes a problem for you? | directly measured |
| pr04a33q05 | To what extent is constipation a problem for you? | directly measured |
| pr04a33q06 | To what extent is nausea a problem for you? | directly measured |
| pr04a33q08 | To what extent is neuropathy a problem for you? | directly measured |
| pr04a33q09 | Rate your overall physical health | directly measured |
| pr04a33q10 | How difficult is it for you to cope today as a result of your disease and treatment? | directly measured |
| pr04a33q11 | How good is your quality of life? | directly measured |
| pr04a33q12 | How much happiness do you feel? | directly measured |
| pr04a33q13 | Do you feel like you are in control of things in your life? | directly measured |
| pr04a33q14 | How satisfying is your life? | directly measured |
| pr04a33q15 | How is your present ability to concentrate or to remember things? | directly measured |
| pr04a33q16 | How useful do you feel? | directly measured |
| pr04a33q17 | Has your illness or treatment caused changes in your appearance? | directly measured |
| pr04a33q18 | Has your illness or treatment caused changes in your self concept (the way you see yourself)? | directly measured |
| pr04a33q19 | How distressing was your initial diagnosis? | directly measured |
| pr04a33q20 | How distressing were the cancer treatments (i.e. chemotherapy, radiation, or surgery)? | directly measured |
| pr04a33q21 | How distressing was the time since my treatment was completed? | directly measured |
| pr04a33q22 | How much anxiety do you have? | directly measured |
| pr04a33q23 | How much depression do you have? | directly measured |
| pr04a33q24 | To what extent are you fearful of future diagnostic tests? | directly measured |
| pr04a33q25 | To what extent are you fearful of a second cancer? | directly measured |
| pr04a33q26 | To what extent are you fearful of recurrence or spreading (metastatis) of your cancer? | directly measured |
| pr04a33q27 | To what extent are you fearful of dying? | directly measured |
| pr04a33q28 | How distressing has illness been for your family? | directly measured |
| pr04a33q29 | Is the amount of support you receive from others sufficient to meet your needs? | directly measured |
| pr04a33q30 | Is your continuing health care interfering with your personal relationships? | directly measured |
| pr04a33q31 | Is your sexuality impacted by your illness? | directly measured |
| pr04a33q32 | To what extent do you have worries about your fertility? | directly measured |
| pr04a33q33 | To what degree has your illness and treatment interfered with your employment? | directly measured |
| pr04a33q34 | To what degree has your illness and treatment interfered with your activities at home? | directly measured |
| pr04a33q35 | How much isolation do you feel is caused by your illness or treatment? | directly measured |
| pr04a33q36 | How much financial burden have you incurred as a result of your illness and treatment? | directly measured |
| pr04a33q37 | To what extent do you have worries about family members getting cancer? | directly measured |
| pr04a33q38 | How important to you is your participation in religious activities such as praying, going to church? | directly measured |
| pr04a33q39 | How important to you are other spiritual activities such as meditation? | directly measured |
| pr04a33q40 | How much has your spiritual life changed as a result of cancer diagnosis? | directly measured |
| pr04a33q41 | How much uncertainty do you feel about your future? | directly measured |
| pr04a33q42 | To what extent has your illness made positive changes in your life? | directly measured |
| pr04a33q43 | Do you sense a purpose/mission for your life or a reason for being alive? | directly measured |
| pr04a33q44 | How hopeful do you feel? | directly measured |
| pr04a33q45 | To what extent have you been bothered by “survival guilt� (that is, you felt guilty because you survived and others have not) | directly measured |
| pr04a33s01 | Physical well-being | derived |
| pr04a33s02 | Psychological well-being | derived |
| pr04a33s03 | Social well-being | derived |
| pr04a33s04 | Spiritual well-being | derived |
| pr04a33s05 | Quality of life total score | derived |
| pr04a45q01 | Over the past week, how often have you leaked urine? | directly measured |
| pr04a45q02 | Over the past week, how often have you urinated blood? | directly measured |
| pr04a45q03 | Over the past week, how often have you had pain or burning with urination? | directly measured |
| pr04a45q04 | Which of the following best describes your urinary control during the last week? | directly measured |
| pr04a45q05 | How many pads or adult diapers per day did you usually use to control leakage during the last week? | directly measured |
| pr04a45q06 | How big a problem was dripping or leaking urine during the last week? | directly measured |
| pr04a45q07 | How big a problem was pain or burning on urination during the last week | directly measured |
| pr04a45q08 | How big a problem was bleeding with urination during the last week? | directly measured |
| pr04a45q09 | How big a problem was a weak urine stream or incomplete emptying during the last week? | directly measured |
| pr04a45q10 | How big a problem was waking up to urinate during the last week? | directly measured |
| pr04a45q11 | How big a problem was the need to urinate frequently during the day during the last week? | directly measured |
| pr04a45q12 | Overall, how big a problem has your urinary function been for you during the last week? | directly measured |
| pr04a45q13 | How often have you had rectal urgency (felt like I had to pass stool, but did not) during the last week? | directly measured |
| pr04a45q14 | How often have you had uncontrolled leakage of stool or feces during the last week? | directly measured |
| pr04a45q15 | How often have you had crampy pain in your abdomen, pelvis or rectum during the last week? | directly measured |
| pr04a45q16 | How often have you had stools (bowel movements) that were loose or liquid (no form, watery, mushy) during the last week? | directly measured |
| pr04a45q17 | How often have you had bloody stools during the last week? | directly measured |
| pr04a45q18 | How often have your bowel movements been painful during the last week? | directly measured |
| pr04a45q19 | How many bowel movements have you had on a typical day during the last 4 weeks? | directly measured |
| pr04a45q20 | How big a problem has the urgency to have a bowel movement been for you? | directly measured |
| pr04a45q21 | How big a problem has the increased frequency of bowel movements been for you? | directly measured |
| pr04a45q22 | How big a problem have watery bowel movements been for you? | directly measured |
| pr04a45q23 | How big a problem has losing control of your stools been for you? | directly measured |
| pr04a45q24 | How big a problem have bloody stools been for you? | directly measured |
| pr04a45q25 | How big a problem have abdominal / pelvic / rectal pains been for you? | directly measured |
| pr04a45q26 | Overall, how big a problem have your bowel habits been for you during the last week? | directly measured |
| pr04a45s01 | Urinary function | derived |
| pr04a45s02 | Urinary bother | derived |
| pr04a45s03 | Urinary summary | derived |
| pr04a45s04 | Bowel function | derived |
| pr04a45s05 | Bowel bother | derived |
| pr04a45s06 | Bowel summary | derived |
| pr04a46q01 | What was your level of sexual desire (sexual thoughts or feelings) during the past week? | directly measured |
| pr04a46q02 | How often during the last week in the evening or at night did you have a spontaneous erection (Partly or fully, not during sexual activity)? | directly measured |
| pr04a46q03 | How would you describe the quality of those spontaneous erections? | directly measured |
| pr04a46q04 | How important is sex to you? | directly measured |
| pr04a46q05 | In general, how satisfied are you with your sex life at the moment? | directly measured |
| pr04a46q06 | Have you been sexually active during the last 2 weeks (For example masturbation or intercourse)? | directly measured |
| pr04a46q07 | I have not been sexually active in the past 2 weeks, because: | directly measured |
| pr04a46q08 | Did you have problems with getting an erection during the past 2 weeks? | directly measured |
| pr04a46q09 | Did you have problems with keeping an erection during the past 2 weeks? | directly measured |
| pr04a46q10 | How would you describe the quality of your erections during sexual activity in the past 2 weeks? | directly measured |
| pr04a46q11 | Do you use sexual aids to help you get an erection? | directly measured |
| pr04a46q12 | Which of the following sexual aids do you use to get an erection? | directly measured |
| pr04a34q01 | Size of the chosen sticker | directly measured |
| pr04a34s01 | Distance in millimeters from the center of the sticker to the center of the yellow circle | derived |
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 964 patients of 18 years and older. 780 patients completed the questionnaire (reponse rate 81%).Collection Events
Period
01-11-2004 to 31-05-2005
Sample
Patients diagnosed with prostate cancer between 1994 and 1998 in the southern region of the Netherlands
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents.
Publications
Health-related quality of life and health care utilisation among older long-term cancer survivors: A population-based study European Journal of Cancer; Floortje Mols,
et al.
Suffering in long-term cancer survivors: An evaluation of the PRISM-R2 in a population-based cohort Quality of Life Research; Vicky Lehmann
et al.
Increased health care utilization among long-term cancer survivors compared to the average Dutch population: A population-based study International Journal of Cancer; Floortje Mols,
et al.
Does diabetes mellitus as a comorbid condition affect the health-related quality of life in prostate cancer survivors? Results of a population-based observational study British Journal of Urology International; Floortje Mols
et al.
Bowel, Urinary, and Sexual Problems among Long-Term Prostate Cancer Survivors: a Population-Based Study International Journal of Radiation Oncology*Biology*Physics; Floortje Mols
et al.
Validation study of the Dutch version of the Quality of Life – Cancer Survivor (QOL-CS) questionnaire in a group of prostate cancer survivors Quality of Life Research; Femke W. van Dis
et al.