Single Wave Study
General Information
Title
Quality of life endometrial cancer 2004
Project Number
9.0
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 |
|---|---|---|
| en04a01pat_id | Patient identifier | preloaded |
| en04a01response | Response status | derived |
| en04a01gend | Gender | preloaded |
| en04a01catageinc | Age category at time of diagnosis | constructed |
| en04a01catageques | Age category at time of study | constructed |
| en04a01timediag | Time passed since diagnosis | constructed |
| en04a01grade | Differentiation grade | preloaded |
| en04a01stage | Stage | preloaded |
| en04a01lymfaden | Lymfadenectomy | preloaded |
| en04a01systemic | Systemic therapy | preloaded |
| en04a01surg | Surgery | preloaded |
| en04a01radio | Radiotherapy | preloaded |
| en04a01ther_oth | Other therapy | preloaded |
| en04a01ther_no | No therapy | preloaded |
| en04a01unknown | Unknown therapy | preloaded |
| en04a01overview | Therapy overview | preloaded |
| en04a01ses | Social Economic Status | preloaded |
| en04a02q01 | What is currently your marital status? | directly measured |
| en04a02q02 | Do you currently have a steady partner? | directly measured |
| en04a02q03 | Do you have children? | directly measured |
| en04a02q04 | Do you live in the same house with your child(ren)? | directly measured |
| en04a02q05 | Did cancer have negative influences on your relationship with your (former) partner? | directly measured |
| en04a02q06 | Indicate below which is your highest education level. | directly measured |
| en04a06q01 | I have no job | directly measured |
| en04a06q02 | I am looking for a job | directly measured |
| en04a06q03 | I am a student | directly measured |
| en04a06q04 | I am a housewife/man | directly measured |
| en04a06q05 | I am disabled | directly measured |
| en04a06q06 | I am retired | directly measured |
| en04a06q07 | I work 1-16 hours a week | directly measured |
| en04a06q08 | I work 17-32 hours a week | directly measured |
| en04a06q09 | I work 33-40 hours a week | directly measured |
| en04a06q10 | I work more than 40 hours a week | directly measured |
| en04a06q11 | Nothing has changed in my work situation | directly measured |
| en04a06q12 | I have been retrained due to cancer | directly measured |
| en04a06q13 | I have quit working due to cancer | directly measured |
| en04a06q14 | I am working more hours due to cancer | directly measured |
| en04a06q15 | I am working less hours due to cancer | directly measured |
| en04a06q16 | I am disabled due to cancer | directly measured |
| en04a06q17 | I have retired early | directly measured |
| en04a06q18 | I have been fired due to cancer | directly measured |
| en04a06q19 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| en04a06q20 | Have you experienced problems with getting life insurance, because of cancer? | directly measured |
| en04a06q21 | Have you experienced problems with getting mortgage, because of cancer? | directly measured |
| en04a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| en04a05q02 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| en04a05q03 | How many of these contact moments had to do with your cancer or the aftermath of your cancer? | directly measured |
| en04a05q04 | Do you still have follow up appointments? | directly measured |
| en04a05q05 | In general, how do or did you feel about the follow up appointments? | directly measured |
| en04a05q06 | Did you want extra care after the treatment of your prostate cancer? | directly measured |
| en04a05q07 | Did you receive care after the treatment of your illness? | directly measured |
| en04a05q08 | Did you get the extra care from a psychologist? | directly measured |
| en04a05q09 | Did you get the extra care from a sexologist? | directly measured |
| en04a05q10 | Did you get the extra care from a social worker? | directly measured |
| en04a05q11 | Did you get the extra care from pastoral care? | directly measured |
| en04a05q12 | Did you get the extra care from a general practitioner? | directly measured |
| en04a05q13 | Did you get the extra care from a dietist? | directly measured |
| en04a05q14 | Did you get the extra care from a physiotherapist? | directly measured |
| en04a05q15 | Did you get the extra care from a recovery program? | directly measured |
| en04a05q16 | Did you get the extra care from creative therapy? | directly measured |
| en04a05q17 | Did you get the extra care from a oncological nurse? | directly measured |
| en04a05q18 | Did you get the extra care from a peer group? | directly measured |
| en04a05q19 | How was the aftercare of your illness in general? | directly measured |
| en04a05q20 | 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 |
| en04a32q01 | Do you currently suffer much from your illness? | directly measured |
| en04a07q01 | Do you have or have you had asthma, chronic bronchitis or COPD in the past 12 months? | directly measured |
| en04a07q02 | Do you have or have you had a heart condition in the past 12 months? | directly measured |
| en04a07q03 | Do you have or have you had high blood pressure in the past 12 months? | directly measured |
| en04a07q04 | Do you have or have you had a stroke in the past 12 months? | directly measured |
| en04a07q05 | Do you have or have you had a kidney disease in the past 12 months? | directly measured |
| en04a07q06 | Do you have or have you had diabetes in the past 12 months? | directly measured |
| en04a07q07 | Do you have or have you had malignancies in the past 12 months? | directly measured |
| en04a07q08 | Do you have or have you had arthritis in the past 12 months? | directly measured |
| en04a07q09 | Do you have or have you had a skin condition in the past 12 months? | directly measured |
| en04a07q10 | Do you have or have you had a liver disease in the past 12 months? | directly measured |
| en04a07q11 | Do you have or have you had a thyroid disease in the past 12 months? | directly measured |
| en04a07q12 | I have had another disease / condition | directly measured |
| en04a07q13 | I don\'t have any of these diseases / conditions | directly measured |
| en04a07q14 | Do you use medication for the disease(s) that you have indicated in the previous question? | directly measured |
| en04a19q01 | In general, would you say your health is | directly measured |
| en04a19q02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
| en04a19q03 | Does your health now limit you in doing vigorous activities, such as running, lifting heavy objects, participating in strenuous sports ming? | directly measured |
| en04a19q04 | Does your health now limit you in doing moderate activities, such as moving a table, pushing a vacuum cleaner or swimming? | directly measured |
| en04a19q05 | Does your health now limit you in lifting or carrying groceries? | directly measured |
| en04a19q06 | Does your health now limit you in climbing several flights of stairs? | directly measured |
| en04a19q07 | Does your health now limit you in climbing one flight of stairs? | directly measured |
| en04a19q08 | Does your health now limit you in bending, kneeling or stooping? | directly measured |
| en04a19q09 | Does your health now limit you in walking more than a mile? | directly measured |
| en04a19q10 | Does your health now limit you in walking several blocks? | directly measured |
| en04a19q11 | Does your health now limit you in walking one block? | directly measured |
| en04a19q12 | Does your health now limit you in bathing or dressing yourself | directly measured |
| en04a19q13 | 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 |
| en04a19q14 | During the past 4 weeks, have you accomplished less than you would like as a result of your physical health? | directly measured |
| en04a19q15 | 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 |
| en04a19q16 | 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 |
| en04a19q17 | 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 |
| en04a19q18 | During the past 4 weeks, have you accomplished less than you would like as a result of any emotional problems? | directly measured |
| en04a19q19 | 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 |
| en04a19q20 | 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 |
| en04a19q21 | How much physical pain have you had during the past 4 weeks? | directly measured |
| en04a19q22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
| en04a19q23 | How much of the time during the past 4 weeks did you feel full of pep? | directly measured |
| en04a19q24 | How much of the time during the past 4 weeks have you been a very nervous person? | directly measured |
| en04a19q25 | 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 |
| en04a19q26 | How much of the time during the past 4 weeks have you felt calm and peaceful? | directly measured |
| en04a19q27 | How much of the time during the past 4 weeks did you have a lot of energy? | directly measured |
| en04a19q28 | How much of the time during the past 4 weeks have you felt downhearted and blue? | directly measured |
| en04a19q29 | How much of the time during the past 4 weeks did you feel worn out? | directly measured |
| en04a19q30 | How much of the time during the past 4 weeks have you been a happy person? | directly measured |
| en04a19q31 | How much of the time during the past 4 weeks did you feel tired? | directly measured |
| en04a19q32 | 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 |
| en04a19q33 | I seem to get sick a little easier than other people | directly measured |
| en04a19q34 | I am as healthy as anybody I know | directly measured |
| en04a19q35 | I expect my health to get worse | directly measured |
| en04a19q36 | My health is excellent | directly measured |
| en04a19s01 | General health | derived |
| en04a19s02 | Physical function | derived |
| en04a19s03 | Role functioning – physical | derived |
| en04a19s04 | Bodily pain | derived |
| en04a19s05 | Vitality / fatigue | derived |
| en04a19s06 | Social functioning | derived |
| en04a19s07 | Role functioning – emotional | derived |
| en04a19s08 | Mental health / well being | derived |
| en04a19s09 | Physical component summary | derived |
| en04a19s10 | Mental component summary | derived |
| en04a33q01 | To what extent is fatigue a problem for you? | directly measured |
| en04a33q02 | To what extent are appetite changes a problem for you? | directly measured |
| en04a33q03 | To what extent are aches or pain a problem for you? | directly measured |
| en04a33q04 | To what extent are sleep changes a problem for you? | directly measured |
| en04a33q05 | To what extent is constipation a problem for you? | directly measured |
| en04a33q06 | To what extent is nausea a problem for you? | directly measured |
| en04a33q07 | To what extent are menstrual changes a problem for you? | directly measured |
| en04a33q08 | To what extent is neuropathy a problem for you? | directly measured |
| en04a33q09 | Rate your overall physical health | directly measured |
| en04a33q10 | How difficult is it for you to cope today as a result of your disease and treatment? | directly measured |
| en04a33q11 | How good is your quality of life? | directly measured |
| en04a33q12 | How much happiness do you feel? | directly measured |
| en04a33q13 | Do you feel like you are in control of things in your life? | directly measured |
| en04a33q14 | How satisfying is your life? | directly measured |
| en04a33q15 | How is your present ability to concentrate or to remember things? | directly measured |
| en04a33q16 | How useful do you feel? | directly measured |
| en04a33q17 | Has your illness or treatment caused changes in your appearance? | directly measured |
| en04a33q18 | Has your illness or treatment caused changes in your self concept (the way you see yourself)? | directly measured |
| en04a33q19 | How distressing was your initial diagnosis? | directly measured |
| en04a33q20 | How distressing were the cancer treatments (i.e. chemotherapy, radiation, or surgery)? | directly measured |
| en04a33q21 | How distressing was the time since my treatment was completed? | directly measured |
| en04a33q22 | How much anxiety do you have? | directly measured |
| en04a33q23 | How much depression do you have? | directly measured |
| en04a33q24 | To what extent are you fearful of future diagnostic tests? | directly measured |
| en04a33q25 | To what extent are you fearful of a second cancer? | directly measured |
| en04a33q26 | To what extent are you fearful of recurrence or spreading (metastatis) of your cancer? | directly measured |
| en04a33q27 | To what extent are you fearful of dying? | directly measured |
| en04a33q28 | How distressing has illness been for your family? | directly measured |
| en04a33q29 | Is the amount of support you receive from others sufficient to meet your needs? | directly measured |
| en04a33q30 | Is your continuing health care interfering with your personal relationships? | directly measured |
| en04a33q31 | Is your sexuality impacted by your illness? | directly measured |
| en04a33q32 | To what extent do you have worries about your fertility? | directly measured |
| en04a33q33 | To what degree has your illness and treatment interfered with your employment? | directly measured |
| en04a33q34 | To what degree has your illness and treatment interfered with your activities at home? | directly measured |
| en04a33q35 | How much isolation do you feel is caused by your illness or treatment? | directly measured |
| en04a33q36 | How much financial burden have you incurred as a result of your illness and treatment? | directly measured |
| en04a33q37 | To what extent do you have worries about family members getting cancer? | directly measured |
| en04a33q38 | How important to you is your participation in religious activities such as praying, going to church? | directly measured |
| en04a33q39 | How important to you are other spiritual activities such as meditation? | directly measured |
| en04a33q40 | How much has your spiritual life changed as a result of cancer diagnosis? | directly measured |
| en04a33q41 | How much uncertainty do you feel about your future? | directly measured |
| en04a33q42 | To what extent has your illness made positive changes in your life? | directly measured |
| en04a33q43 | Do you sense a purpose/mission for your life or a reason for being alive? | directly measured |
| en04a33q44 | How hopeful do you feel? | directly measured |
| en04a33q45 | To what extent have you been bothered by “survival guilt� (that is, you felt guilty because you survived and others have not) | directly measured |
| en04a33s01 | Physical well-being | derived |
| en04a33s02 | Psychological well-being | derived |
| en04a33s03 | Social well-being | derived |
| en04a33s04 | Spiritual well-being | derived |
| en04a33s05 | Quality of life total score | derived |
| en04a13q01 | During the past 4 weeks, to what extent were you interested in sex? | directly measured |
| en04a13q02 | During the past 4 weeks, to what extent were you sexually active? | directly measured |
| en04a13q03 | If you have been sexually active during the past 4 weeks, was sexual activity enjoyable for you? | directly measured |
| en04a13q04 | If you have been sexually active during the past 4 weeks, has your vagina felt dry during sexual activity? | directly measured |
| en04a27q01 | Do you use the internet? | directly measured |
| en04a27q02 | How often do you use the internet? | directly measured |
| en04a27q03 | Do you use the internet for sending and receiving e-mail? | directly measured |
| en04a27q04 | Do you use the internet for searching for information | directly measured |
| en04a27q05 | Do you use the internet for participating in chat groups? | directly measured |
| en04a27q06 | Do you use the internet for asking questions to experts? | directly measured |
| en04a27q07 | Do you use the internet for participating in user groups? | directly measured |
| en04a27q08 | Do you use the internet with regard to information about cancer and the consequences of cancer? | directly measured |
| en04a27q09 | Do you use the internet to maintain e-mail (or digital) contact with your doctor? | directly measured |
| en04a27q10 | Do you use the internet to maintain e-mail (or digital) contact with an internet doctor? | directly measured |
| en04a27q11 | Do you use the internet to maintain e-mail (or digital) contact with peers? | directly measured |
| en04a27q12 | Do you use the internet to maintain e-mail (or digital) contact with members of a discussion group? | directly measured |
| en04a27q13 | Do you think that it is important that information can be found on the internet about cancer? | directly measured |
| en04a27q14 | Do you think that it is important that information can be found on the internet about possible treatments? | directly measured |
| en04a27q15 | Do you think that it is important that information can be found on the internet about possible alternative therapies? | directly measured |
| en04a27q16 | Do you think that it is important that information can be found on the internet about where to find a good doctor? | directly measured |
| en04a27q17 | Do you think that it is important that information can be found on the internet about what the best hospital is? | directly measured |
| en04a27q18 | Do you think that it is important that information can be found on the internet about what patient groups have to offer? | directly measured |
| en04a27q19 | Do you think that it is important that information can be found on the internet about which activities there are in the region for patients? | directly measured |
| en04a27q20 | Do you think that it is important that information can be found on the internet about which trials/studies there are? | directly measured |
| en04a27q21 | Do you think that it is important that information can be found on the internet about treatment guidelines? | directly measured |
| en04a27q22 | Do you think that it is important that information can be found on the internet about peer groups? | directly measured |
| en04a27q23 | Do you think that it is important that information can be found on the internet about what you can do yourself? | directly measured |
| en04a27q24 | Do you think that it is important that information can be found on the internet about consequences for my partner? | directly measured |
| en04a27q25 | Do you think that it is important that information can be found on the internet about consequences for my children? | directly measured |
| en04a27q26 | Have you searched for information about cancer on the internet and did you find it? | directly measured |
| en04a27q27 | Have you searched for information about possible treatments on the internet and did you find it? | directly measured |
| en04a27q28 | Have you searched for information about possible alternative therapies on the internet and did you find it? | directly measured |
| en04a27q29 | Have you searched for information about where to find a good doctor on the internet and did you find it? | directly measured |
| en04a27q30 | Have you searched for information about what the best hospital is on the internet and did you find it? | directly measured |
| en04a27q31 | Have you searched for information about what patient groups have to offer on the internet and did you find it? | directly measured |
| en04a27q32 | Have you searched for information about which activities there are in the region for patients on the internet and did you find it? | directly measured |
| en04a27q33 | Have you searched for information about which trials/studies there are on the internet and did you find it? | directly measured |
| en04a27q34 | Have you searched for information about treatment guidelines on the internet and did you find it? | directly measured |
| en04a27q35 | Have you searched for information about peer groups on the internet and did you find it? | directly measured |
| en04a27q36 | Have you searched for information about what you can do yourself on the internet and did you find it? | directly measured |
| en04a27q37 | Have you searched for information about consequences for my partner on the internet and did you find it? | directly measured |
| en04a27q38 | Have you searched for information about consequences for my children on the internet and did you find it? | directly measured |
| en04a34q01 | Size of the chosen sticker | directly measured |
| en04a34s01 | Distance in millimeters from the center of the sticker to the center of the yellow circle | derived |
Questions
Questionnaire: Quality of life endometrium cancer
The questionnaire was originally conducted in Dutch.
Browse Quality of life endometrium cancerResponse Information
Response Overview
The questionnaire was submitted to 405 patients of 18 years and older. 305 patients completed the questionnaire (reponse rate 75%).Collection Events
Period
01-11-2004 to 31-05-2005
Sample
Patients diagnosed with endometrial 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.