Longitudinal Wave
General Information
Title
Quality of life multiple myeloma May 2009
Project Number
5.1c
Longitudinal Type
Longitudinal Wave
Begin date
01-05-2009
End date
01-08-2009
Researcher
Simone Oerlemans, Lonneke van de Poll - Franse
Publisher
IKNL Profiles study
Copyright
Copyright IKNL Profiles study
Funding Organization
Jonker-Driessen Foundation
ZonMW (the Netherlands organization for health research and development)
NWO (the Netherlands Organization for Scientific Research)
ZonMW (the Netherlands organization for health research and development)
NWO (the Netherlands Organization for Scientific Research)
Codebooks and other materials
View Documentation
Codebook in English
Variables
| Variable name | Variable Label | Variable Type |
|---|---|---|
| mm09a01pat_id | Patient identifier | preloaded |
| mm09a01response | Response status | derived |
| mm09a01gend | Gender | preloaded |
| mm09a01ageques | Age category at time of questionnaire (May 2009) | constructed |
| mm09a01ageinc | Age category at time of diagnosis | constructed |
| mm09a01yrsdiag | Time passed since diagnosis | constructed |
| mm09a01treatment | Type of treatment | preloaded |
| mm09a01transplantation | Stem cell transplantation | preloaded |
| mm09a01stage | Stage | preloaded |
| mm09a01bmi | Body Mass Index | derived |
| mm09a01SES3 | Social Economic Status in 3(4) categories | preloaded |
| mm09a02q01 | What is currently your marital status? | directly measured |
| mm09a02q02 | Indicate below which is your highest education level. | directly measured |
| mm09a06q01 | Do you have a paid job at this moment? | directly measured |
| mm09a06q02 | Paid job hours/week | directly measured |
| mm09a06q03 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| mm09a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| mm09a05q02 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| mm09a05q03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| mm09a05q04 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| mm09a05q05 | Do you still have follow up appointments? | directly measured |
| mm09a05q06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| mm09a05q07 | Do you feel comfortable with this follow up scheme? | directly measured |
| mm09a05q08 | Did you receive care after the treatment of your illness? | directly measured |
| mm09a05q09 | Did you receive extra care from a psychologist? | directly measured |
| mm09a05q10 | Did you receive extra care from a sexologist? | directly measured |
| mm09a05q11 | Did you receive extra care from a social worker? | directly measured |
| mm09a05q12 | Did you receive extra care from pastoral care? | directly measured |
| mm09a05q13 | Did you receive extra care from a General Practitioner? | directly measured |
| mm09a05q14 | Did you receive extra care from a dietist? | directly measured |
| mm09a05q15 | Did you receive extra care from a physiotherapis? | directly measured |
| mm09a05q16 | Did you receive extra care from recovery and balance? | directly measured |
| mm09a05q17 | Did you receive extra care from creative therapy? | directly measured |
| mm09a05q18 | Did you receive extra care from an oncological nurse? | directly measured |
| mm09a05q19 | Did you receive extra care from a peer group? | directly measured |
| mm09a07q01 | Have you had a heart condition in the past 12 months? | directly measured |
| mm09a07q15 | Have you been treated for your heart condition? | directly measured |
| mm09a07q29 | Have you had a heart condition in the past 12 months? | directly measured |
| mm09a07q02 | Have you had a stroke in the past 12 months? | directly measured |
| mm09a07q16 | Have you been treated for your stroke? | directly measured |
| mm09a07q30 | Did your stroke interfere with your activities? | directly measured |
| mm09a07q03 | Have you had a high blood pressure in the past 12 months? | directly measured |
| mm09a07q17 | Have you been treated for your high blood pressure? | directly measured |
| mm09a07q31 | Did your high blood pressure interfere with your activities? | directly measured |
| mm09a07q04 | Have you had astma, chronic bronchitis or COPD in the past 12 months? | directly measured |
| mm09a07q18 | Have you been treated for your astma, chronic bronchitis or COPD? | directly measured |
| mm09a07q32 | Did your astma, chronis bronchitis or COPD interfere with your activities? | directly measured |
| mm09a07q05 | Have you had diabetes in the past 12 months? | directly measured |
| mm09a07q19 | Have you been treated for your diabetes? | directly measured |
| mm09a07q33 | Did your diabetes interfere with your activities? | directly measured |
| mm09a07q06 | Have you had ulcer in the past 12 months? | directly measured |
| mm09a07q20 | Have you been treated for your ulcer? | directly measured |
| mm09a07q34 | Did your ulcer interfere with your activities? | directly measured |
| mm09a07q07 | Have you had a kidney disease in the past 12 months? | directly measured |
| mm09a07q21 | Have you been treated for your kidney disease? | directly measured |
| mm09a07q35 | Did your kidney disease interfere with your activities? | directly measured |
| mm09a07q08 | Have you had a liver disease in the past 12 months? | directly measured |
| mm09a07q22 | Have you been treated for your liver disease? | directly measured |
| mm09a07q36 | Did your liver disease interfere with your activities? | directly measured |
| mm09a07q09 | Have you had anemia or another blood condition in the past 12 months? | directly measured |
| mm09a07q23 | Have you been treated for your anemia or other blood condition? | directly measured |
| mm09a07q37 | Did your anemia or other blood condition interfere with your activities? | directly measured |
| mm09a07q10 | Have you had a thyroid disease in the past 12 months? | directly measured |
| mm09a07q24 | Have you been treated for your thyroid disease? | directly measured |
| mm09a07q38 | Did your thyroid disease interfere with your activities? | directly measured |
| mm09a07q11 | Have you had a depression in the past 12 months? | directly measured |
| mm09a07q25 | Have you been treated for your depression? | directly measured |
| mm09a07q39 | Did your depression interfere with your activities? | directly measured |
| mm09a07q12 | Have you had arthritis in the past 12 months? | directly measured |
| mm09a07q26 | Have you been treated for your arthritis? | directly measured |
| mm09a07q40 | Did your arthritis interfere with your activities? | directly measured |
| mm09a07q13 | Have you had a backache in the past 12 months? | directly measured |
| mm09a07q27 | Have you been treated for your backache? | directly measured |
| mm09a07q41 | Did your backache interfere with your activities? | directly measured |
| mm09a07q14 | Have you had rheumatism in the past 12 months? | directly measured |
| mm09a07q28 | Have you been treated for your rheumatism? | directly measured |
| mm09a07q42 | Did your rheumatism interfere with your activities? | directly measured |
| mm09a06q04 | Which changes have you experienced in your work situation due to cancer? | directly measured |
| mm09a06q05 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| mm09a06q06 | You have indicated that you have had trouble getting (additional) health insurance. What was the outcome? | directly measured |
| mm09a06q07 | Did you have trouble getting life insurance, because of cancer? | directly measured |
| mm09a06q08 | You have indicated that you have had trouble getting life insurance. What was the outcome? | directly measured |
| mm09a06q09 | Did you have trouble getting mortgage, because of cancer? | directly measured |
| mm09a06q10 | You have indicated that you have had trouble getting mortgage. What was the outcome? | directly measured |
| mm09a09q01 | Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase? | directly measured |
| mm09a09q02 | Do you have any trouble taking a long walk? | directly measured |
| mm09a09q03 | Do you have any trouble taking a short walk outside of the house? | directly measured |
| mm09a09q04 | Do you need to stay in bed or a chair during the day? | directly measured |
| mm09a09q05 | Do you need help with eating, dressing, washing yourself or using the toilet? | directly measured |
| mm09a09q06 | Were you limited in doing either your work or other daily activities during the past week? | directly measured |
| mm09a09q07 | Were you limited in pursuing your hobbies or other leisure time activities during the past week? | directly measured |
| mm09a09q08 | Were you short of breath during the past week? | directly measured |
| mm09a09q09 | Have you had pain during the past week? | directly measured |
| mm09a09q10 | Did you need to rest during the past week? | directly measured |
| mm09a09q11 | Have you had trouble sleeping during the past week? | directly measured |
| mm09a09q12 | Have you felt weak during the past week? | directly measured |
| mm09a09q13 | Have you lacked appetite during the past week? | directly measured |
| mm09a09q14 | Have you felt nauseated during the past week? | directly measured |
| mm09a09q15 | Have you vomited during the past week? | directly measured |
| mm09a09q16 | Have you been constipated during the past week? | directly measured |
| mm09a09q17 | Have you had diarrhea during the past week? | directly measured |
| mm09a09q18 | Were you tired during the past week? | directly measured |
| mm09a09q19 | Did pain interfere with your daily activities during the past week? | directly measured |
| mm09a09q20 | Have you had difficulty in concentrating on things, like reading a newspaper or watching television during the past week? | directly measured |
| mm09a09q21 | Did you feel tense during the past week? | directly measured |
| mm09a09q22 | Did you worry during the past week? | directly measured |
| mm09a09q23 | Did you feel irritable during the past week? | directly measured |
| mm09a09q24 | Did you feel depressed during the past week? | directly measured |
| mm09a09q25 | ave you had difficulty remembering things during the past week? | directly measured |
| mm09a09q26 | Has your physical condition or medical treatment interfered with your family life during the past week? | directly measured |
| mm09a09q27 | Has your physical condition or medical treatment interfered with your social activities during the past week? | directly measured |
| mm09a09q28 | Has your physical condition or medical treatment caused you financial difficulties during the past week? | directly measured |
| mm09a09q29 | How would you rate your overall health during the past week? | directly measured |
| mm09a09q30 | How would you rate your overall quality of life during the past week? | directly measured |
| mm09a09s01 | Physical Functioning | derived |
| mm09a09s02 | Role Functioning | derived |
| mm09a09s03 | Emotional Functioning | derived |
| mm09a09s04 | Cognitive Functioning | derived |
| mm09a09s05 | Social Functioning | derived |
| mm09a09s06 | Global health status / QoL | derived |
| mm09a09s07 | Fatigue | derived |
| mm09a09s08 | Nausea / Vomiting | derived |
| mm09a09s09 | Pain | derived |
| mm09a09s10 | Dyspnoea | derived |
| mm09a09s11 | Insomnia | derived |
| mm09a09s12 | Appetite loss | derived |
| mm09a09s13 | Constipation | derived |
| mm09a09s14 | Diarhea | derived |
| mm09a09s15 | Financial Problems | derived |
| mm09a11q01 | Have you had bone aches or pain? | directly measured |
| mm09a11q02 | Have you had pain in your back? | directly measured |
| mm09a11q03 | Have you had pain in your hip? | directly measured |
| mm09a11q04 | Have you had pain in your arm or shoulder? | directly measured |
| mm09a11q05 | Have you had pain in your chest? | directly measured |
| mm09a11q06 | If you had pain did it increase with activity? | directly measured |
| mm09a11q07 | Did you feel drowsy? | directly measured |
| mm09a11q08 | Did you feel thirsty? | directly measured |
| mm09a11q09 | Have you felt ill? | directly measured |
| mm09a11q10 | Have you had a dry mouth? | directly measured |
| mm09a11q11 | Have you lost any hair? | directly measured |
| mm09a11q12 | Were you upset by the loss of your hair? | directly measured |
| mm09a11q13 | Did you have tingling hands or feet? | directly measured |
| mm09a11q14 | Did you feel restless or agitated? | directly measured |
| mm09a11q15 | Have you had acid indigestion or heartburn? | directly measured |
| mm09a11q16 | Have you had burning or sore eyes? | directly measured |
| mm09a11q17 | Have you felt physically less attractive as a result of your disease or treatment? | directly measured |
| mm09a11q18 | Have you been thinking about your illness? | directly measured |
| mm09a11q19 | Have you been worried about dying? | directly measured |
| mm09a11q20 | Have you worried about your health in the future? | directly measured |
| mm09a11s01 | Disease symptoms | derived |
| mm09a11s02 | Side effects therapy | derived |
| mm09a11s03 | Bodyimage | derived |
| mm09a11s04 | Future perspective | derived |
| mm09a20q01 | Mobility | directly measured |
| mm09a20q02 | Self care | directly measured |
| mm09a20q03 | Daily affairs (For example work, school, householding, family- and leisure activities) | directly measured |
| mm09a20q04 | Pain / Troubles | directly measured |
| mm09a20q05 | Mood | directly measured |
| mm09a21q01 | I make contact easily when I meet people. | directly measured |
| mm09a21q02 | I often make a fuss about unimportant things. | directly measured |
| mm09a21q03 | I often talk to strangers. | directly measured |
| mm09a21q04 | I often feel unhappy. | directly measured |
| mm09a21q05 | I am often irritated. | directly measured |
| mm09a21q06 | I often feel inhibited in social interactions. | directly measured |
| mm09a21q07 | I take a gloomy view on things. | directly measured |
| mm09a21q08 | I find it hard to start a conversation. | directly measured |
| mm09a21q09 | I am often in a bad mood. | directly measured |
| mm09a21q10 | I am a closed kind of person. | directly measured |
| mm09a21q11 | I would rather keep other people at a distance. | directly measured |
| mm09a21q12 | I often find myself worrying about something. | directly measured |
| mm09a21q13 | I am often down in the dumps. | directly measured |
| mm09a21q14 | When socializing, I don’t find the right things to talk about. | directly measured |
| mm09a21s01 | Negative affect subscale | derived |
| mm09a21s02 | Social inhibition subscale | derived |
| mm09a21s03 | Type D Personality | derived |
| mm09a22q01 | How much does your illness affect your life? | directly measured |
| mm09a22q02 | How long do you think your illness will continue? | directly measured |
| mm09a22q03 | How much control do you feel you have over your illness? | directly measured |
| mm09a22q04 | How much do you think your treatment can help your illness? | directly measured |
| mm09a22q05 | How much do you experience symptoms from your illness? | directly measured |
| mm09a22q06 | How concerned are you about your illness? | directly measured |
| mm09a22q07 | How well do you feel you understand your illness? | directly measured |
| mm09a22q08 | How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed? | directly measured |
| mm09a23q01 | I am bothered by fatigue | directly measured |
| mm09a23q02 | I get tired very quickly | directly measured |
| mm09a23q03 | I don’t do much during the day | directly measured |
| mm09a23q04 | I have enough energy for everyday life | directly measured |
| mm09a23q05 | I have enough energy for everyday life | directly measured |
| mm09a23q06 | I have problems starting things | directly measured |
| mm09a23q07 | I have problems thinking clearly | directly measured |
| mm09a23q08 | I feel no desire to do anything | directly measured |
| mm09a23q09 | Mentally, I feel exhausted | directly measured |
| mm09a23q10 | When I am doing something, I can concentrate quite well | directly measured |
| mm09a23s01 | FAS total score | derived |
| mm09a24q01 | feel tense or ‘wound up’ | directly measured |
| mm09a24q02 | I still enjoy the things I used to enjoy | directly measured |
| mm09a24q03 | I get a sort of frightened feeling as if something awful is about to happen | directly measured |
| mm09a24q04 | I can laugh and see the funny side of things | directly measured |
| mm09a24q05 | Worrying thoughts go through my mind | directly measured |
| mm09a24q06 | I feel cheerful | directly measured |
| mm09a24q07 | I can sit at ease and feel relaxed | directly measured |
| mm09a24q08 | I feel as if I am slowed down | directly measured |
| mm09a24q09 | I get a sort of frightened feeling like ‘butterflies’ in the stomach | directly measured |
| mm09a24q10 | I have lost interest in my appearance | directly measured |
| mm09a24q11 | I feel restless, as if I have to be on the move | directly measured |
| mm09a24q12 | I look forward with enjoyment to things | directly measured |
| mm09a24q13 | I get sudden feelings of panic | directly measured |
| mm09a24q14 | I can enjoy a good book or radio or TV program | directly measured |
| mm09a24s01 | Anxiety total score | derived |
| mm09a24s02 | Depression total score | derived |
| mm09a25q01 | I learned something about life because of having had cancer | directly measured |
| mm09a25q02 | Having had cancer makes me feel unsure about my future | directly measured |
| mm09a25q03 | I worry about my future | directly measured |
| mm09a25q04 | I am afraid to die | directly measured |
| mm09a25q05 | I feel like time in my life is running out | directly measured |
| mm09a25q06 | Having had cancer has made me realize that time is precious | directly measured |
| mm09a25q07 | Having had cancer has strengthened my religious faith or my sense of spirituality | directly measured |
| mm09a25q08 | I do not take my body for granted since the cancer | directly measured |
| mm09a25q09 | Having had cancer has made me more concerned about my health | directly measured |
| mm09a25q10 | I am more aware of physical problems or changes in my body since having had cancer | directly measured |
| mm09a25q11 | I worry about my health | directly measured |
| mm09a25q12 | I worry about the cancer coming back or about getting another cancer | directly measured |
| mm09a25q13 | New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back | directly measured |
| mm09a25q14 | I am concerned that my energy has not returned to what it was before I had cancer | directly measured |
| mm09a25q15 | I am bothered that my body cannot do what it could before having had cancer | directly measured |
| mm09a25q16 | I worry about how my body looks | directly measured |
| mm09a25q17 | I feel disfigured | directly measured |
| mm09a25q18 | I sometimes wear clothing to cover up parts of my body I don’t want others to see | directly measured |
| mm09a25q19 | Having had cancer has made me take better care of myself (my health) | directly measured |
| mm09a25q20 | Having to pay attention to my physical health interferes with my life | directly measured |
| mm09a25q21 | I feel a sense of pride or accomplishment from surviving cancer | directly measured |
| mm09a25q22 | I learned something about myself because of having had cancer | directly measured |
| mm09a25q24 | I feel guilty for somehow being responsible for getting cancer | directly measured |
| mm09a25q25 | I feel that I am a role model to other people with cancer | directly measured |
| mm09a25q26 | Having had cancer has made me feel old | directly measured |
| mm09a25q27 | I feel guilty today for not having been available to my family when I had cancer | directly measured |
| mm09a25q28 | Having had cancer has been the most difficult experience in my life | directly measured |
| mm09a25q29 | I wonder why I got cancer | directly measured |
| mm09a25q30 | It is important for me to know why I got cancer | directly measured |
| mm09a25q31 | Having had cancer turned into a reason to make changes in my life | directly measured |
| mm09a25q32 | Because of cancer I have become better about expressing what I want | directly measured |
| mm09a25q33 | Because of cancer I have more confidence in myself | directly measured |
| mm09a25q34 | Having had cancer has given me direction in life | directly measured |
| mm09a25q35 | I place a higher value on my relationships with family or friends than I did before having had cancer | directly measured |
| mm09a25q36 | I feel a special bond with people with cancer | directly measured |
| mm09a25q37 | Because I had cancer I am more understanding of what other people may feel when they are seriously ill | directly measured |
| mm09a25q38 | Having had cancer has made me more willing to help others | directly measured |
| mm09a25q39 | I feel that I should give something back to others because I survived cancer | directly measured |
| mm09a25q40 | Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family) | directly measured |
| mm09a25q41 | On-going cancer-related or treatment-related symptoms (for example bladder or bowel control, lymphedema, hair loss, scars, infertility, premature menopause, lack of energy, impotence/sexual problems, aches, pain or physical discomfort) interfere with my life. | directly measured |
| mm09a25s01 | Physical: health awareness | derived |
| mm09a25s02 | Physical: body changes | derived |
| mm09a25s03 | Psychological: positive self-evaluation | derived |
| mm09a25s04 | Psychological: negative self-evaluation | derived |
| mm09a25s05 | Existential: positive outlook | derived |
| mm09a25s06 | Existential: negative outlook | derived |
| mm09a25s07 | Social: life interferences | derived |
| mm09a25s08 | Social: value of relationships | derived |
| mm09a25s09 | IOC meaning of cancer | derived |
| mm09a25s10 | IOC health worry | derived |
| mm09a25s11 | IOC higher order positive scale | derived |
| mm09a25s12 | IOC higher order negative scale | derived |
| mm09a26q01 | During your current disease or treatment, how much information have you received on the diagnosis of your disease? | directly measured |
| mm09a26q02 | During your current disease or treatment, how much information have you received on the extent (spread) of your disease? | directly measured |
| mm09a26q03 | During your current disease or treatment, how much information have you received on the possible causes of your disease? | directly measured |
| mm09a26q04 | During your current disease or treatment, how much information have you received on whether the disease is under control? | directly measured |
| mm09a26q05 | During your current disease or treatment, how much information have you received on the purpose of any medical tests you have had or may undergo? | directly measured |
| mm09a26q06 | During your current disease or treatment, how much information have you received on the procedures of the medical tests? | directly measured |
| mm09a26q07 | During your current disease or treatment, how much information have you received on the results of the medical tests you have already received? | directly measured |
| mm09a26q08 | During your current disease or treatment, how much information have you received on the medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
| mm09a26q09 | During your current disease or treatment, how much information have you received on non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)? | directly measured |
| mm09a26q10 | During your current disease or treatment, how much information have you received on the expected benefit of the treatment? | directly measured |
| mm09a26q11 | During your current disease or treatment, how much information have you received on the possible side-effects of your treatment? | directly measured |
| mm09a26q12 | During your current disease or treatment, how much information have you received on the expected effects of the treatment on disease symptoms? | directly measured |
| mm09a26q13 | During your current disease or treatment, how much information have you received on the effects of the treatment on social and family life? | directly measured |
| mm09a26q14 | During your current disease or treatment, how much information have you received on the effects of the treatment on sexual activity? | directly measured |
| mm09a26q15 | During your current disease or treatment, 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 |
| mm09a26q16 | During your current disease or treatment, how much information have you received on rehabilitation services (e. g. physiotherapy, occupational therapy)? | directly measured |
| mm09a26q17 | During your current disease or treatment, how much information have you received on aspects of managing your illness at home? | directly measured |
| mm09a26q18 | During your current disease or treatment, how much information have you received on possible professional psychological support? | directly measured |
| mm09a26q19 | During your current disease or treatment, how much information have you received on different places of care (hospitals/outpatient services/home)? | directly measured |
| mm09a26q20 | During your current disease or treatment, how much information have you received on things that you can do to help yourself get well (rest, contact with others..)? | directly measured |
| mm09a26q21 | Have you received written information? | directly measured |
| mm09a26q22 | Have you received information on CD or tape / video? | directly measured |
| mm09a26q23 | Were you satisfied with the amount of information you received? | directly measured |
| mm09a26q24 | Do you wish to receive more information? | directly measured |
| mm09a26q25 | Do you wish that you had received less information? | directly measured |
| mm09a26q26 | Overall has the information you have received been helpful? | directly measured |
| mm09a26s01 | Information on your disease | derived |
| mm09a26s02 | Information on your medical tests | derived |
| mm09a26s03 | Information on treatment/your treatments | derived |
| mm09a26s04 | Information on other services | derived |
| mm09a26s05 | Information on other areas/places of care | derived |
| mm09a26s06 | Information on things patient can do to get well | derived |
| mm09a26s07 | Written information | derived |
| mm09a26s08 | Information on cd, tape, video | derived |
| mm09a26s09 | Satisfaction with information | derived |
| mm09a26s10 | Desire to receive more information | derived |
| mm09a26s11 | Desire to receive less information | derived |
| mm09a26s12 | Helpfulness of information | derived |
| mm09a27q01 | Do you use the Internet? | directly measured |
| mm09a27q02 | Did you use the Internet to find information about multiple myeloma? | directly measured |
Questions
Questionnaire: Quality of life multiple myeloma
The questionnaire was originally conducted in Dutch.
Browse Quality of life multiple myelomaResponse Information
Response Overview
The questionnaire was submitted to 160 patients of 18 years and older. 120 patients completed the questionnaire (reponse rate 75%).Collection Events
Period
01-05-2009 to 01-08-2009
Sample
Patients diagnosed with multiple myeloma between 1999 and 2008 in the southern region of the Netherlands
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents.