Single Wave Study
General Information
Title
Quality of life endometrial cancer 2008
Project Number
7.0
Longitudinal Type
Single Wave Study
Begin date
01-05-2008
End date
31-05-2009
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 |
|---|---|---|
| en08a01pat_id | Patient identifier | preloaded |
| en08a01resp | Responder | derived |
| en08a01catageques | Age category at time of study | constructed |
| en08a01catageinc | Age category at time of diagnosis | constructed |
| en08a01timediag | Time passed since diagnosis | constructed |
| en08a01treat | Primary treatment | preloaded |
| en08a01stadkort | Stage of disease | preloaded |
| en08a01grade | Grade of tumor | preloaded |
| en08a01BMI | Body Mass Index (BMI) | constructed |
| en08a01t_ses3 | Social Economic Status in 3(4) categories | preloaded |
| en08a02q01 | What is currently your marital status? | directly measured |
| en08a02q02 | What is the highest educationlevel that you have completed? | directly measured |
| en08a06q01 | Do you have a paid job at this moment? | directly measured |
| en08a06q02 | Paid job hours/week | directly measured |
| en08a06q03 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| en08a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| en08a05q02 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| en08a05q03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| en08a05q04 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| en08a05q05 | Do you still have follow up appointments | directly measured |
| en08a05q06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| en08a05q07 | Do you feel comfortable with this follow up scheme? | directly measured |
| en08a05q08 | Did you receive care after the treatment of your illness? | directly measured |
| en08a05q09 | Psychologist | directly measured |
| en08a05q10 | Sexologist | directly measured |
| en08a05q11 | Social worker | directly measured |
| en08a05q12 | Pastoral care | directly measured |
| en08a05q13 | General practitioner | directly measured |
| en08a05q14 | Dietician | directly measured |
| en08a05q15 | Physiotherapist | directly measured |
| en08a05q16 | Recovery program | directly measured |
| en08a05q17 | Creative therapy | directly measured |
| en08a05q18 | Oncological nurse | directly measured |
| en08a05q19 | Contact with other cancer survivors | directly measured |
| en08a07q01 | Do you have now, or did you have in the past 12 months: heart condition | directly measured |
| en08a07q15 | Are you being treated for: heart condition | directly measured |
| en08a07q29 | Does the condition interfere with your activities: heart condtion | directly measured |
| en08a07q02 | Do you have now, or did you have in the past 12 months: stroke | directly measured |
| en08a07q16 | Are you being treated for: stroke | directly measured |
| en08a07q30 | Does the condition interfere with your activities: stroke | directly measured |
| en08a07q03 | Do you have now, or did you have in the past 12 months: high blood pressure | directly measured |
| en08a07q17 | Are you being treated for: high blood pressure | directly measured |
| en08a07q31 | Does the condition interfere with your activities: high blood pressure | directly measured |
| en08a07q04 | Do you have now, or did you have in the past 12 months: asthma, chronic bronchitis, COPD | directly measured |
| en08a07q18 | Are you being treated for: asthma, chronic bronchitis, COPD | directly measured |
| en08a07q32 | Does the condition interfere with your activities: asthma, chronic bronchitis, COPD | directly measured |
| en08a07q05 | Do you have now, or did you have in the past 12 months: diabetes | directly measured |
| en08a07q19 | Are you being treated for: diabetes | directly measured |
| en08a07q33 | Does the condition interfere with your activities: diabetes | directly measured |
| en08a07q06 | Do you have now, or did you have in the past 12 months: ulcer | directly measured |
| en08a07q20 | Are you being treated for: ulcer | directly measured |
| en08a07q34 | Does the condition interfere with your activities: ulcer | directly measured |
| en08a07q07 | Do you have now, or did you have in the past 12 months: kidney disease | directly measured |
| en08a07q21 | Are you being treated for: kidney disease | directly measured |
| en08a07q35 | Does the condition interfere with your activities: kidney disease | directly measured |
| en08a07q08 | Do you have now, or did you have in the past 12 months: liver disease | directly measured |
| en08a07q22 | Are you being treated for: liver disease | directly measured |
| en08a07q36 | Does the condition interfere with your activities: liver disease | directly measured |
| en08a07q09 | Do you have now, or did you have in the past 12 months: anemia or other blood condition | directly measured |
| en08a07q23 | Are you being treated for: anemia or other blood condition | directly measured |
| en08a07q37 | Does the condition interfere with your activities: anemia or other blood condition | directly measured |
| en08a07q10 | Do you have now, or did you have in the past 12 months: thyroid disease | directly measured |
| en08a07q24 | Are you being treated for: thyroid disease | directly measured |
| en08a07q38 | Does the condition interfere with your activities: thyriod disease | directly measured |
| en08a07q11 | Do you have now, or did you have in the past 12 months: depression | directly measured |
| en08a07q25 | Are you being treated for: depression | directly measured |
| en08a07q39 | Does the condition interfere with your activities: depression | directly measured |
| en08a07q12 | Do you have now, or did you have in the past 12 months: arthritis | directly measured |
| en08a07q26 | Are you being treated for: arthritis | directly measured |
| en08a07q40 | Does the condition interfere with your activities: arthritis | directly measured |
| en08a07q13 | Do you have now, or did you have in the past 12 months: backache | directly measured |
| en08a07q27 | Are you being treated for: backache | directly measured |
| en08a07q41 | Does the condition interfere with your activities: backache | directly measured |
| en08a07q14 | Do you have now, or did you have in the past 12 months: rheumatism | directly measured |
| en08a07q28 | Are you being treated for: rheumatism | directly measured |
| en08a07q42 | Does the condition interfere with your activities: rheumatism | directly measured |
| en08a19q01 | In general, how would you say your health is | directly measured |
| en08a19q02 | Compared to one year ago, how would you rate your health in general now? | directly measured |
| en08a19q03 | Does your health now limit you in these activities: Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports | directly measured |
| en08a19q04 | Does your health now limit you in these activities: Moderate activities, such as moving a table, pushing a vacuum cleaner, swimming | directly measured |
| en08a19q05 | Does your health now limit you in these activities: Lifting or carrying groceries | directly measured |
| en08a19q06 | Does your health now limit you in these activities: Climbing several flights of stairs | directly measured |
| en08a19q07 | Does your health now limit you in these activities: Climbing one flight of stairs | directly measured |
| en08a19q08 | Does your health now limit you in these activities: Bending, kneeling or stooping | directly measured |
| en08a19q09 | Does your health now limit you in these activities: Walking more than a mile | directly measured |
| en08a19q10 | Does your health now limit you in these activities: Walking several blocks | directly measured |
| en08a19q11 | Does your health now limit you in these activities: Walking one block | directly measured |
| en08a19q12 | Does your health now limit you in these activities: Bathing or dressing yourself | directly measured |
| en08a19q13 | 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 |
| en08a19q14 | 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 |
| en08a19q15 | 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 |
| en08a19q16 | 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 |
| en08a19q17 | 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 |
| en08a19q18 | 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 |
| en08a19q19 | 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 |
| en08a19q20 | 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 |
| en08a19q21 | How much bodily pain have you had during the past 4 weeks? | directly measured |
| en08a19q22 | During the past 4 weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? | directly measured |
| en08a19q23 | How much of the time during the past 4 weeks: Did you feel full of pep? | directly measured |
| en08a19q24 | How much of the time during the past 4 weeks: Have you been a very nervous person | directly measured |
| en08a19q25 | 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 |
| en08a19q26 | How much of the time during the past 4 weeks: Have you felt calm and peaceful | directly measured |
| en08a19q27 | How much of the time during the past 4 weeks: Did you have a lot of energy? | directly measured |
| en08a19q28 | How much of the time during the past 4 weeks: Have you felt downhearted and blue? | directly measured |
| en08a19q29 | How much of the time during the past 4 weeks: Did you feel worn out? | directly measured |
| en08a19q30 | How much of the time during the past 4 weeks: Have you been a happy person? | directly measured |
| en08a19q31 | How much of the time during the past 4 weeks: Did you feel tired? | directly measured |
| en08a19q32 | 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 |
| en08a19q33 | 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 |
| en08a19q34 | How true or false is each of the following statements for you: I am as healthy as anybody I know | directly measured |
| en08a19q35 | How true or false is each of the following statements for you: I expect my health to get worse | directly measured |
| en08a19q36 | How true or false is each of the following statements for you: My health is excellent | directly measured |
| en08a19s01 | General health perceptions scale | derived |
| en08a19s02 | Physical functioning scale | derived |
| en08a19s03 | Role functioning - physical scale | derived |
| en08a19s04 | Bodily pain scale | derived |
| en08a19s05 | Vitality scale | derived |
| en08a19s06 | Social functioning scale | derived |
| en08a19s07 | Role functioning - emotional scale | derived |
| en08a19s08 | Mental health scale | derived |
| en08a13q01 | During the past week: Have you had swelling in one or both legs? | directly measured |
| en08a13q02 | During the past week: Have you felt heaviness in one or both legs? | directly measured |
| en08a13q03 | During the past week: Have you had pain in your lower back and/or pelvis? | directly measured |
| en08a13q04 | Answer only if you had surgery: During the past week: Have you had pain in your scar? | directly measured |
| en08a13q05 | During the past week: When you felt the urge to pass urine, did you have to hurry to get to the toilet? | directly measured |
| en08a13q06 | During the past week: Have you passed urine frequently? | directly measured |
| en08a13q07 | During the past week: Have you had difficulty emptying your bladder? | directly measured |
| en08a13q08 | During the past week: Have you had leaking of urine? | directly measured |
| en08a13q09 | During the past week: Have you been limited in your daily activities because of problems with urinating? | directly measured |
| en08a13q10 | During the past week: Have you had pain or a burning feeling when passing urine? | directly measured |
| en08a13q11 | During the past week: When you felt the urge to move your bowels, did you have to hurry to get to the toilet? | directly measured |
| en08a13q12 | During the past week: Have you had any leakage of stools? | directly measured |
| en08a13q13 | During the past week: Have you been limited in your daily activities because of problems with defecation? | directly measured |
| en08a13q14 | During the past week: Have you been troubled by passing wind? | directly measured |
| en08a13q15 | During the past week: Have you had cramps in your abdomen? | directly measured |
| en08a13q16 | During the past week: Have you had diarrhea? | directly measured |
| en08a13q17 | During the past week: Have you had blood in your stools? | directly measured |
| en08a13q18 | During the past week: Have you had a bloated feeling in your abdomen? | directly measured |
| en08a13q19 | During the past week: Have you had irritation or soreness in your vagina or vulva? | directly measured |
| en08a13q20 | During the past week: Have you had bleeding from your vagina? | directly measured |
| en08a13q21 | During the past week: Have you had mood swings? | directly measured |
| en08a13q22 | During the past week: Have you had hot flushes and/or sweats? | directly measured |
| en08a13q23 | During the past week: Have you had tingling or numbness in your hands or feet? | directly measured |
| en08a13q24 | During the past week: Have you had aches or pains in your muscles or joints? | directly measured |
| en08a13q25 | During the past week: Have you gained weight? | directly measured |
| en08a13q26 | During the past week: Have you lost hair? | directly measured |
| en08a13q27 | During the past week: Have you had skin problems? | directly measured |
| en08a13q28 | During the past week: Has food and drink tasted differently from usual? | directly measured |
| en08a13q29 | During the past week: Have you had problems with hearing? | directly measured |
| en08a13q30 | During the past week: Have you felt physically less attractive as a result of your disease or treatment? | directly measured |
| en08a13q31 | During the past week: Have you felt less feminine as a result of your disease or treatment? | directly measured |
| en08a13q32 | During the past 4 weeks: To what extent were you interested in sex? | directly measured |
| en08a13q33 | During the past 4 weeks: To what extent were you sexually active? | directly measured |
| en08a13q34 | During the past 4 weeks: Has your vagina felt dry during sexual activity? | directly measured |
| en08a13q35 | During the past 4 weeks: Has your vagina felt short and/or tight? | directly measured |
| en08a13q36 | During the past 4 weeks: Have you had pain during sexual intercourse or other sexual activity? | directly measured |
| en08a13q37 | During the past 4 weeks: Was sexual activity enjoyable for you? | directly measured |
| en08a13s01 | Lymphedema scale | derived |
| en08a13s02 | Urological symptoms scale | derived |
| en08a13s03 | Gastrointestinal symptoms scale | derived |
| en08a13s04 | Poor bodyimage scale | derived |
| en08a13s05 | Sexual/vaginal problems scale | derived |
| en08a13s06 | Pain in back and pelvis scale | derived |
| en08a13s07 | Tingling/numbness scale | derived |
| en08a13s08 | Muscular/joint pain scale | derived |
| en08a13s09 | Hairloss scale | derived |
| en08a13s10 | Taste change scale | derived |
| en08a13s11 | Sexual Interest scale | derived |
| en08a13s12 | Sexual Activity scale | derived |
| en08a13s13 | Sexual Enjoyment scale | derived |
| en08a21q01 | I make contact easily when I meet people | directly measured |
| en08a21q02 | I often make a fuss about unimportant things | directly measured |
| en08a21q03 | I often talk to strangers | directly measured |
| en08a21q04 | I often feel unhappy | directly measured |
| en08a21q05 | I am often irritated | directly measured |
| en08a21q06 | I often feel inhibited in social interactions | directly measured |
| en08a21q07 | I take a gloomy view on things | directly measured |
| en08a21q08 | I find it hard to start a conversation | directly measured |
| en08a21q09 | I am often in a bad mood | directly measured |
| en08a21q10 | I am a closed kind of person | directly measured |
| en08a21q11 | I would rather keep other people at a distance | directly measured |
| en08a21q12 | I often find myself worrying about something | directly measured |
| en08a21q13 | I am often down in the dumps | directly measured |
| en08a21q14 | When socializing, I don\'t find the right things to talk about | directly measured |
| en08a21s01 | Negative affect subscale | derived |
| en08a21s02 | Social inhibition subscale | derived |
| en08a21s03 | Type D personality | derived |
| en08a22q01 | How much does your illness affect your life? | directly measured |
| en08a22q02 | How long do you think your illness will continue? | directly measured |
| en08a22q03 | How much control do you feel you have over your illness? | directly measured |
| en08a22q04 | How much do you think your treatment can help your illness? | directly measured |
| en08a22q05 | How much do you experience symptoms from your illness? | directly measured |
| en08a22q06 | How concerned are you about your illness? | directly measured |
| en08a22q07 | How well do you feel you understand your illness? | directly measured |
| en08a22q08 | How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed? | directly measured |
| en08a23q01 | I am bothered by fatigue | directly measured |
| en08a23q02 | I get tired very quickly | directly measured |
| en08a23q03 | I don’t do much during the day | directly measured |
| en08a23q04 | I have enough energy for everyday life | directly measured |
| en08a23q05 | Physically, I feel exhausted | directly measured |
| en08a23q06 | I have problems starting things | directly measured |
| en08a23q07 | I have problems thinking clearly | directly measured |
| en08a23q08 | I feel no desire to do anything | directly measured |
| en08a23q09 | Mentally, I feel exhausted | directly measured |
| en08a23q10 | When I am doing something, I can concentrate quite well | directly measured |
| en08a23s01 | FAS total score | derived |
| en08a24q01 | I feel tense or \'wound up\' | directly measured |
| en08a24q02 | I still enjoy the things I used to enjoy | directly measured |
| en08a24q03 | I get a sort of frightened feeling as if something awful is about to happen | directly measured |
| en08a24q04 | I can laugh and see the funny side of things | directly measured |
| en08a24q05 | Worrying thoughts go through my mind | directly measured |
| en08a24q06 | I feel cheerful | directly measured |
| en08a24q07 | I can sit at ease and feel relaxed | directly measured |
| en08a24q08 | I feel as if I am slowed down | directly measured |
| en08a24q09 | I get a sort of frightened feeling like \'butterflies\' in the stomach | directly measured |
| en08a24q10 | I have lost interest in my appearance | directly measured |
| en08a24q11 | I feel restless, as if I have to be on the move | directly measured |
| en08a24q12 | I look forward with enjoyment to things | directly measured |
| en08a24q13 | I get sudden feelings of panic | directly measured |
| en08a24q14 | I can enjoy a good book or radio or TV program | directly measured |
| en08a24s01 | Anxiety total score | derived |
| en08a24s02 | Depression total score | derived |
| en08a25q01 | I am concerned about not being able to work if I become ill again | directly measured |
| en08a25q02 | Concerns about losing health insurance keep me in the job I have now | directly measured |
| en08a25q03 | I worry about being forced to retire or quit work before I am ready | directly measured |
| en08a25q04 | Because of cancer I live each day one at a time | directly measured |
| en08a25q05 | I feel grateful to be alive | directly measured |
| en08a25q06 | I feel like time in my life is limited | directly measured |
| en08a25q07 | I learned something about life because of having had cancer | directly measured |
| en08a25q08 | Having had cancer makes me feel unsure about my future | directly measured |
| en08a25q09 | I worry about my future | directly measured |
| en08a25q10 | I am afraid to die | directly measured |
| en08a25q11 | I can accept my mortality, that I am going to die someday | directly measured |
| en08a25q12 | I feel like time in my life is running out | directly measured |
| en08a25q13 | Having had cancer has made me realize that time is precious | directly measured |
| en08a25q14 | Having had cancer has strengthened my religious faith or my sense of spirituality | directly measured |
| en08a25q15 | I do not take my body for granted since the cancer | directly measured |
| en08a25q16 | Having had cancer has made me more concerned about my health | directly measured |
| en08a25q17 | I am more aware of physical problems or changes in my body since having had cancer | directly measured |
| en08a25q18 | Other health problems not related to cancer bother me more than having had cancer | directly measured |
| en08a25q19 | I worry about my health | directly measured |
| en08a25q20 | I accept the changes my bode has gone through as a result of cancer and its treatment | directly measured |
| en08a25q21 | I worry about the cancer coming back or about getting another cancer | directly measured |
| en08a25q22 | New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back | directly measured |
| en08a25q23 | Having had cancer makes me feel uncertain about my health | directly measured |
| en08a25q24 | I am concerned that my energy has not returned to what it was before I had cancer | directly measured |
| en08a25q25 | I am bothered that my body cannot do what it could before having had cancer | directly measured |
| en08a25q26 | I worry about how my body looks | directly measured |
| en08a25q27 | I feel disfigured | directly measured |
| en08a25q28 | I sometimes wear clothing to cover up parts of my body I do not want others to see | directly measured |
| en08a25q29 | Having had cancer has made me take better care of myself (my health) | directly measured |
| en08a25q30 | Having to pay attention to my physical health interferes with my life | directly measured |
| en08a25q31 | I am unable to think or remember things like I used to | directly measured |
| en08a25q32 | I consider myself to be a cancer survivor | directly measured |
| en08a25q33 | I feel a sense of pride or accomplishment from surviving cancer | directly measured |
| en08a25q34 | I learned something about myself because of having had cancer | directly measured |
| en08a25q35 | I am angry about having had cancer | directly measured |
| en08a25q36 | I feel guilty for somehow being responsible for getting cancer | directly measured |
| en08a25q37 | I feel that I am a role model to other people with cancer | directly measured |
| en08a25q38 | As time goes on, having had cancer becomes less important to me | directly measured |
| en08a25q39 | Having had cancer has made me feel old | directly measured |
| en08a25q40 | I feel guilty today for not having been available to my family when I had cancer | directly measured |
| en08a25q41 | My sense of myself as a cancer survivor has lessened over time | directly measured |
| en08a25q42 | My life would be better today if I had not had cancer | directly measured |
| en08a25q43 | Having had cancer has been the most difficult experience in my life | directly measured |
| en08a25q44 | Having had cancer has not been as big a deal as other things that have happened in my life | directly measured |
| en08a25q45 | I view having had cancer as a private experience | directly measured |
| en08a25q46 | I wish to forget about having had cancer | directly measured |
| en08a25q47 | I am constantly reminded that I had cancer | directly measured |
| en08a25q48 | Something good has come from having had cancer | directly measured |
| en08a25q49 | I think the doctors should have done a better job treating my cancer | directly measured |
| en08a25q50 | Now that my treatment has ended I feel like my cancer doctors are not interested in my well-being | directly measured |
| en08a25q51 | I wonder why I got cancer | directly measured |
| en08a25q52 | It is important for me to know why I got cancer | directly measured |
| en08a25q53 | Having had cancer turned into a reason to make changes in my life | directly measured |
| en08a25q54 | Because of cancer I have become better about expressing what I want | directly measured |
| en08a25q55 | Because of cancer I have more confidence in myself | directly measured |
| en08a25q56 | Having had cancer has given me direction in life | directly measured |
| en08a25q57 | I feel like cancer runs my life | directly measured |
| en08a25q58 | Because of having had cancer I feel that I have more control of my life | directly measured |
| en08a25q59 | I have financial problems that are related to having had cancer | directly measured |
| en08a25q60 | Within the past year I have had difficulty getting my health insurance to pay some of my medical bills | directly measured |
| en08a25q61 | I place a higher value on my relationships with family or friends than I did before having had cancer | directly measured |
| en08a25q62 | I feel a special bond with people with cancer | directly measured |
| en08a25q63 | Because of cancer I am more understanding of what other people may feel when they are seriously ill | directly measured |
| en08a25q64 | Having had cancer has made me more willing to help others | directly measured |
| en08a25q65 | I feel that I should give something back to others because I survived cancer | directly measured |
| en08a25q66 | I worry about friends dying from cancer | directly measured |
| en08a25q67 | Having had cancer has made me feel alone | directly measured |
| en08a25q68 | Having had cancer has made me feel like some people (friends, family, co-workers) do not understand me | directly measured |
| en08a25q69 | I am concerned about my children getting cancer | directly measured |
| en08a25q70 | Uncertainty about my future affects my decisions to make plans (examples: work, recreation/travel, get married, get involved in relationships, have a family, go to school) | directly measured |
| en08a25q71 | Having had cancer has motivated me to make plans for dying (get my affairs in order) | directly measured |
| en08a25q72 | Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family) | directly measured |
| en08a25q73 | 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 l | directly measured |
| en08a25q74 | Uncertainties about my health or my future have made me delay getting married or getting involved in a serious relationship | directly measured |
| en08a25q75 | I wonder how to tell a potential spouse, partner, boyfriend or girlfriend that I have had cancer | directly measured |
| en08a25q76 | I am concerned about how to tell a spouse, partner, boyfriend, or girlfriend that I may not be able to have children | directly measured |
| en08a25q77 | I worry about not having a spouse, partner, boyfriend or girlfriend | directly measured |
| en08a25q78 | I am open and willing to discuss my cancer with my spouse/partner | directly measured |
| en08a25q79 | My spouse/partner is open and willing to discuss my cancer with me | directly measured |
| en08a25q80 | Uncertainty about my health has created problems in my relationship with my spouse/partner | directly measured |
| en08a25q81 | I worry about my spouse/partner leaving me if I were to become ill again | directly measured |
| en08a25s01 | IOCv1 - Physical: health awareness scale | derived |
| en08a25s02 | IOCv1 - Physical: body changes scale | derived |
| en08a25s03 | IOCv1 - Psychological: positive self-evaluation scale | derived |
| en08a25s04 | IOCv1 - Psychological: negative self-evaluation scale | derived |
| en08a25s05 | IOCv1 - Existential: positive outlook scale | derived |
| en08a25s06 | IOCv1 - Existential: negative outlook scale | derived |
| en08a25s07 | IOCv1 - Social: life interferences scale | derived |
| en08a25s08 | IOCv1 - Social: value of relationships scale | derived |
| en08a25s09 | IOCv1 - Meaning of cancer scale | derived |
| en08a25s10 | IOCv1 - Health worry scale | derived |
| en08a25s11 | IOCv1 - Positive higher order scale score | derived |
| en08a25s12 | IOCv1 - Negative higher order scale score | derived |
| en08a25s13 | IOCv2 - Altruism and empathy subscale | derived |
| en08a25s14 | IOCv2 - Health awareness subscale | derived |
| en08a25s15 | IOCv2 - Meaning of cancer subscale | derived |
| en08a25s16 | IOCv2 - Positive self-evaluation subscale | derived |
| en08a25s17 | IOCv2 - Appearance concerns subscale | derived |
| en08a25s18 | IOCv2 - Body change concerns subscale | derived |
| en08a25s19 | IOCv2 - Life interferences subscale | derived |
| en08a25s20 | IOCv2 - Worry subscale | derived |
| en08a25s21 | IOCv2 - Employment concerns subscale | derived |
| en08a25s22 | IOCv2 - Relationship concerns subscale (partnered) | derived |
| en08a25s23 | IOCv2 - Relationship concerns subscale (not partnered) | derived |
| en08a25s24 | IOCv2 - Positive higher order scale score | derived |
| en08a25s25 | IOCv2 - Negative higher order scale score | derived |
| en08a26q01 | How much information have you received on: The diagnosis of your disease? | directly measured |
| en08a26q02 | How much information have you received on: The extent (spread) of your disease? | directly measured |
| en08a26q03 | How much information have you received on: The possible causes of your disease? | directly measured |
| en08a26q04 | How much information have you received on: Whether the disease is under control? | directly measured |
| en08a26q05 | How much information have you received on: The purpose of any medical tests you have had or may undergo? | directly measured |
| en08a26q06 | How much information have you received on: The procedures of the medical tests? | directly measured |
| en08a26q07 | How much information have you received on: The results of the medical tests you have already received? | directly measured |
| en08a26q08 | How much information have you received on: The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
| en08a26q09 | How much information have you received on: Non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)? | directly measured |
| en08a26q10 | How much information have you received on: The expected benefit of the treatment? | directly measured |
| en08a26q11 | How much information have you received on: The possible side-effects of your treatment? | directly measured |
| en08a26q12 | How much information have you received on: The expected effects of the treatment on disease symptoms? | directly measured |
| en08a26q13 | How much information have you received on: The effects of the treatment on social and family life? | directly measured |
| en08a26q14 | How much information have you received on: The effects of the treatment on sexual activity? | directly measured |
| en08a26q15 | 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 |
| en08a26q16 | How much information have you received on: Rehabilitation services (e. g. physiotherapy, occupational therapy)? | directly measured |
| en08a26q17 | How much information have you received on: Aspects of managing your illness at home? | directly measured |
| en08a26q18 | How much information have you received on: Possible professional psychological support? | directly measured |
| en08a26q19 | How much information have you received on: Different places of care (hospitals/outpatient services/home)? | directly measured |
| en08a26q20 | How much information have you received on: Things that you can do to help yourself get well (rest, contact with others..)? | directly measured |
| en08a26q21 | Have you received written information? | directly measured |
| en08a26q22 | Have you received information on CD or tape / video? | directly measured |
| en08a26q23 | Were you satisfied with the amount of information you received? | directly measured |
| en08a26q24 | Do you wish to receive more information? | directly measured |
| en08a26q25 | Do you wish that you had received less information? | directly measured |
| en08a26q26 | Overall has the information you have received been helpful? | directly measured |
| en08a26s01 | Information on your disease scale | derived |
| en08a26s02 | Information on your medical tests scale | derived |
| en08a26s03 | Information on treatment/your treatments scale | derived |
| en08a26s04 | Information on other services scale | derived |
| en08a26s05 | Information on other areas/places of care scale | derived |
| en08a26s06 | Information on things patient can do to get well scale | derived |
| en08a27q01 | Do you use the internet? | directly measured |
| en08a27q02 | Did you use the internet to find information about endometrial cancer? | directly measured |
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 965 patients of 18 years and older. 742 patients completed the questionnaire (reponse rate 77%).
De vragenlijst is voorgelegd aan 965 panelleden van 18 jaar en ouder, waarvan 742 de vragenlijst compleet invulden (responspercentage 77%).
Collection Events
Period
01-05-2008 to 31-05-2009
Sample
Patients diagnosed with endometrial cancer between 1999 and 2007 in the southern region of the Netherlands
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents.
Publications
Follow-up practice in endometrial cancer and the association with patient and hospital characteristics: A study from the population-based PROFILES registry Gynecologic Oncology; Kim A.H. Nicolaije
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.
Endometrial cancer survivors are unsatisfied with received information about diagnosis, treatment and follow-up: A study from the population-based PROFILES registry Patient Education and Counseling; Nicolaije, KA
et al.
The relationship of body mass index with quality of life among endometrial cancer survivors: A study from the population-based PROFILES registry Gynecologic Oncology; Oldenburg, CS
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.
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.