Quality of life lymphoma > Quality of life non-Hodgkin lymphoma May 2010
Longitudinal Wave
General Information
Title
Quality of life non-Hodgkin lymphoma May 2010
Project Number
5.3a
Longitudinal Type
Longitudinal Wave
Begin date
01-05-2010
End date
01-08-2010
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 |
|---|---|---|
| nhl10a01pat_id | Patient identifier | preloaded |
| nhl10a01response | Response status | derived |
| nhl10a01gend | Gender | preloaded |
| nhl10a01ageinc | Age category at time of diagnosis | constructed |
| nhl10a01ageques | Age category at time of questionnaire | constructed |
| nhl10a01yrsdiag | Time passed since diagnosis in categories | constructed |
| nhl10a01tumor | Non-Hodgkin Lymphoma/Chronic Lymfatic Leukemia | preloaded |
| nhl10a01treatment | Primary treatment | preloaded |
| nhl10a01stage | Stage | preloaded |
| nhl10a01bmi | Body Mass Index | constructed |
| nhl10a01SES3 | SES status in 3(4) categories | preloaded |
| nhl10a01mode | Questionnaire filled in online or on paper | derived |
| nhl10a02q01 | What is currently your marital status? | directly measured |
| nhl10a02q02 | Indicate below which is your highest education level. | directly measured |
| nhl10a06q01 | Do you have a paid job at this moment? | directly measured |
| nhl10a06q02 | Paid job hours/week | directly measured |
| nhl10a06q06 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| nhl10a06q08 | Percentage of incapacity | directly measured |
| nhl10a06q09 | Due to cancer? | directly measured |
| nhl10a03q01 | Do you smoke? | directly measured |
| nhl10a03q02 | How long has it been you've quit smoking? | directly measured |
| nhl10a03q03 | Number of cigarettes per day | directly measured |
| nhl10a03q04 | Number of cigars per week | directly measured |
| nhl10a03q05 | Number of packages of pipe tobacco (50 grams) per week | directly measured |
| nhl10a03q06 | Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months? | directly measured |
| nhl10a03q07 | How long has it been you've been quit drinking alcohol? | directly measured |
| nhl10a03q08 | Number of glasses of beer per week | directly measured |
| nhl10a03q09 | Number of glasses of wine or port wine per week | directly measured |
| nhl10a03q10 | Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor) | directly measured |
| nhl10a04q01 | Going for a walk in the summer (also walking to work, shopping, and walking in leisure time) | directly measured |
| nhl10a04q02 | Going for a walk in the winter (also walking to work, shopping, and walking in leisure time) | directly measured |
| nhl10a04q03 | Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time) | directly measured |
| nhl10a04q04 | Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time) | directly measured |
| nhl10a04q05 | Gardening in the summer | directly measured |
| nhl10a04q06 | Gardening in the winter | directly measured |
| nhl10a04q07 | Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children) | directly measured |
| nhl10a04q08 | Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children) | directly measured |
| nhl10a04q09 | Have you done weekly sporting ativities in the past year? | directly measured |
| nhl10a05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| nhl10a05q02 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| nhl10a05q03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| nhl10a05q04 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| nhl10a05q05 | Do you still have follow up appointments? | directly measured |
| nhl10a05q06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| nhl10a05q07 | Do you feel comfortable with this follow up scheme? | directly measured |
| nhl10a05q08 | Did you receive care after the treatment of your illness? | directly measured |
| nhl10a05q09 | Did you get extra care from a psychologist? | directly measured |
| nhl10a05q10 | Did you get extra care from a sexologist? | directly measured |
| nhl10a05q11 | Did you get extra care from a social worker? | directly measured |
| nhl10a05q12 | Did you get extra care from pastoral care? | directly measured |
| nhl10a05q13 | Did you get extra care from your general practitioner? | directly measured |
| nhl10a05q14 | Did you get extra care from a dietist | directly measured |
| nhl10a05q15 | Did you get extra care from a physiotherapist? | directly measured |
| nhl10a05q16 | Did you get extra care from recovery and balance? | directly measured |
| nhl10a05q17 | Did you get extra care from creative therapy? | directly measured |
| nhl10a05q18 | Did you get extra care from an oncological nurse? | directly measured |
| nhl10a05q19 | Did you get extra care from a peer group | directly measured |
| nhl10a05q20 | Did you get extra care from someone else? | directly measured |
| nhl10a07q01 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Heart condition | directly measured |
| nhl10a07q02 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Stroke | directly measured |
| nhl10a07q03 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: High blood pressure | directly measured |
| nhl10a07q04 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Asthma, chonic bronchitis, COPD | directly measured |
| nhl10a07q05 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Diabetes | directly measured |
| nhl10a07q06 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Ulcer | directly measured |
| nhl10a07q07 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Kidney disease | directly measured |
| nhl10a07q08 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Liver disease | directly measured |
| nhl10a07q09 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Anemia or other blood condition | directly measured |
| nhl10a07q10 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Thyroid disease | directly measured |
| nhl10a07q11 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Depression | directly measured |
| nhl10a07q12 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Arthritis | directly measured |
| nhl10a07q13 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Backache | directly measured |
| nhl10a07q14 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Rheumatism | directly measured |
| nhl10a07q15 | Are you being treated for your heart condition? | directly measured |
| nhl10a07q16 | Are you being treated for your stroke? | directly measured |
| nhl10a07q17 | Are you being treated for your high blood pressure? | directly measured |
| nhl10a07q18 | Are you being treated for your asthma, chronic bronchitis or COPD? | directly measured |
| nhl10a07q19 | Are you being treated for your diabetes? | directly measured |
| nhl10a07q20 | Are you being treated for your ulcer? | directly measured |
| nhl10a07q21 | Are you being treated for your kidney disease? | directly measured |
| nhl10a07q22 | Are you being treated for your liver disease? | directly measured |
| nhl10a07q23 | Are you being treated for your anemia or other blood condition? | directly measured |
| nhl10a07q24 | Are you being treated for your thyroid disease? | directly measured |
| nhl10a07q25 | Are you being treated for your depression? | directly measured |
| nhl10a07q26 | Are you being treated for your arthritis? | directly measured |
| nhl10a07q27 | Are you being treated for your backache? | directly measured |
| nhl10a07q28 | Are you being treated for your rheumatism? | directly measured |
| nhl10a07q29 | Does your heart condition interfere with your activities? | directly measured |
| nhl10a07q30 | Does your stroke interfere with your activities? | directly measured |
| nhl10a07q31 | Does your high blood pressure interfere with your activities? | directly measured |
| nhl10a07q32 | Does your asthma, chronic bronchitis or COPD interfere with your activities? | directly measured |
| nhl10a07q33 | Does your diabetes interfere with your activities? | directly measured |
| nhl10a07q34 | Does your ulcer interfere with your activities? | directly measured |
| nhl10a07q35 | Does your kidney disease interfere with your activities? | directly measured |
| nhl10a07q36 | Does your liver disease interfere with your activities? | directly measured |
| nhl10a07q37 | Does your anemia or other blood condition interfere with your activities? | directly measured |
| nhl10a07q38 | Does your thyroid disease interfere with your activities? | directly measured |
| nhl10a07q39 | Does your depression interfere with your activities? | directly measured |
| nhl10a07q40 | Does your arthritis interfere with your activities? | directly measured |
| nhl10a07q41 | Does your backache interfere with your activities? | directly measured |
| nhl10a07q42 | Does your rheumatism interfere with your activities? | directly measured |
| nhl10a06q07 | Which changes have you experienced in your work situation due to cancer? | directly measured |
| nhl10a53q01 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| nhl10a53q02 | You have indicated that you have had trouble getting (additional) health insurance. What was the outcome? | directly measured |
| nhl10a53q03 | Did you have trouble getting life insurance, because of cancer? | directly measured |
| nhl10a53q04 | You have indicated that you have had trouble getting life insurance. What was the outcome? | directly measured |
| nhl10a53q05 | Did you have trouble getting mortgage, because of cancer? | directly measured |
| nhl10a53q06 | You have indicated that you have had trouble getting mortgage. What was the outcome? | directly measured |
| nhl10a09q01 | Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase? | directly measured |
| nhl10a09q02 | Do you have any trouble taking a long walk? | directly measured |
| nhl10a09q03 | Do you have any trouble taking a short walk outside of the house? | directly measured |
| nhl10a09q04 | Do you need to stay in bed or a chair during the day? | directly measured |
| nhl10a09q05 | Do you need help with eating, dressing, washing yourself or using the toilet? | directly measured |
| nhl10a09q06 | Were you limited in doing either your work or other daily activities? | directly measured |
| nhl10a09q07 | Were you limited in pursuing your hobbies or other leisure time activities | directly measured |
| nhl10a09q08 | Were you short of breath? | directly measured |
| nhl10a09q09 | Have you had pain? | directly measured |
| nhl10a09q10 | Did you need to rest? | directly measured |
| nhl10a09q11 | Have you had trouble sleeping? | directly measured |
| nhl10a09q12 | Have you felt weak? | directly measured |
| nhl10a09q13 | Have you lacked appetite? | directly measured |
| nhl10a09q14 | Have you felt nauseated? | directly measured |
| nhl10a09q15 | Have you vomited? | directly measured |
| nhl10a09q16 | Have you been constipated? | directly measured |
| nhl10a09q17 | Have you had diarrhea? | directly measured |
| nhl10a09q18 | Were you tired? | directly measured |
| nhl10a09q19 | Did pain interfere with your daily activities? | directly measured |
| nhl10a09q20 | Have you had difficulty in concentrating on things, like reading a newspaper or watching television? | directly measured |
| nhl10a09q21 | Did you feel tense? | directly measured |
| nhl10a09q22 | Did you worry? | directly measured |
| nhl10a09q23 | Did you feel irritable? | directly measured |
| nhl10a09q24 | Did you feel depressed? | directly measured |
| nhl10a09q25 | Have you had difficulty remembering things? | directly measured |
| nhl10a09q26 | Has your physical condition or medical treatment interfered with your family life? | directly measured |
| nhl10a09q27 | Has your physical condition or medical treatment interfered with your social activities? | directly measured |
| nhl10a09q28 | Has your physical condition or medical treatment caused you financial difficulties? | directly measured |
| nhl10a09q29 | How would you rate your overall health during the past week? | directly measured |
| nhl10a09q30 | How would you rate your overall quality of life during the past week? | directly measured |
| nhl10a09s01 | Global health status/QoL | derived |
| nhl10a09s02 | Physical Function | derived |
| nhl10a09s03 | Role Function | derived |
| nhl10a09s04 | Emotional Function | derived |
| nhl10a09s05 | Cognitive Function | derived |
| nhl10a09s06 | Social Function | derived |
| nhl10a09s07 | Fatigue | derived |
| nhl10a09s08 | Nausea / vomiting | derived |
| nhl10a09s09 | Pain | derived |
| nhl10a09s10 | Dyspnoea | derived |
| nhl10a09s11 | Insomnia | derived |
| nhl10a09s12 | Appetite loss | derived |
| nhl10a09s13 | Constipation | derived |
| nhl10a09s14 | Diarrhea | derived |
| nhl10a09s15 | Financial problems | derived |
| nhl10a11q01 | Have you lost weight? | directly measured |
| nhl10a11q02 | Have you had a dry mouth? | directly measured |
| nhl10a11q03 | Did you bruise? | directly measured |
| nhl10a11q04 | Did you have abdominal discomfort? | directly measured |
| nhl10a11q05 | Has your temperature been going up and down? | directly measured |
| nhl10a11q06 | Did you have night sweats? | directly measured |
| nhl10a11q07 | Have you had skin problems (e.g. itchy, dry)? | directly measured |
| nhl10a11q08 | Did you feel ill or unwell? | directly measured |
| nhl10a11q09 | Did you feel lethargic? | directly measured |
| nhl10a11q10 | Have you felt “slowed down� | directly measured |
| nhl10a11q11 | Did you have tingling hands or feet? | directly measured |
| nhl10a11q12 | Were you limited in planning activities (for example meeting friends)? | directly measured |
| nhl10a11q13 | Have you worried about your health in the future? | directly measured |
| nhl10a11q14 | Have you had trouble with chest infections? | directly measured |
| nhl10a11q15 | Have you had trouble with other infections? | directly measured |
| nhl10a11q16 | Have you needed repeated courses of antibiotics? | directly measured |
| nhl10a11q17 | Have you worried about picking up an infection? | directly measured |
| nhl10a23q01 | I am bothered by fatigue | directly measured |
| nhl10a23q02 | I get tired very quickly | directly measured |
| nhl10a23q03 | I don’t do much during the day | directly measured |
| nhl10a23q04 | I have enough energy for everyday life | directly measured |
| nhl10a23q05 | Physically, I feel exhausted | directly measured |
| nhl10a23q06 | I have problems starting things | directly measured |
| nhl10a23q07 | I have problems thinking clearly | directly measured |
| nhl10a23q08 | I feel no desire to do anything | directly measured |
| nhl10a23q09 | Mentally, I feel exhausted | directly measured |
| nhl10a23q10 | When I am doing something, I can concentrate quite well | directly measured |
| nhl10a23s01 | FAS total score | derived |
| nhl10a24q01 | I feel tense or ‘wound up’ | directly measured |
| nhl10a24q02 | I still enjoy the things I used to enjoy | directly measured |
| nhl10a24q03 | I get a sort of frightened feeling as if something awful is about to happen | directly measured |
| nhl10a24q04 | I can laugh and see the funny side of things | directly measured |
| nhl10a24q05 | Worrying thoughts go through my mind | directly measured |
| nhl10a24q06 | I feel cheerful | directly measured |
| nhl10a24q07 | I can sit at ease and feel relaxed | directly measured |
| nhl10a24q08 | I feel as if I am slowed down | directly measured |
| nhl10a24q09 | I get a sort of frightened feeling like ‘butterflies’ in the stomach | directly measured |
| nhl10a24q10 | I have lost interest in my appearance | directly measured |
| nhl10a24q11 | I feel restless, as if I have to be on the move | directly measured |
| nhl10a24q12 | I look forward with enjoyment to things | directly measured |
| nhl10a24q13 | I get sudden feelings of panic | directly measured |
| nhl10a24q14 | I can enjoy a good book or radio or TV program | directly measured |
| nhl10a24s01 | HADS anxiety | derived |
| nhl10a24s02 | HADS depression | derived |
| nhl10a25q01 | I learned something about life because of having cancer | directly measured |
| nhl10a25q02 | Having had cancer makes me feel unsure about my future. | directly measured |
| nhl10a25q03 | I worry about my future. | directly measured |
| nhl10a25q04 | I am afraid to die. | directly measured |
| nhl10a25q05 | I feel like time in my life is running out. | directly measured |
| nhl10a25q06 | Having had cancer has made me realize that time is precious. | directly measured |
| nhl10a25q07 | Having had cancer has strengthened my religious faith or my sense of spirituality. | directly measured |
| nhl10a25q08 | I do not take my body for granted since the cancer. | directly measured |
| nhl10a25q09 | Having had cancer has made me more concerned about my health. | directly measured |
| nhl10a25q10 | I am more aware of physical problems or changes in my body since having had cancer. | directly measured |
| nhl10a25q11 | I worry about my health. | directly measured |
| nhl10a25q12 | I worry about the cancer coming back or about getting another cancer. | directly measured |
| nhl10a25q13 | New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming back. | directly measured |
| nhl10a25q14 | I am concerned that my energy has not returned to what it was before I had cancer. | directly measured |
| nhl10a25q15 | I am bothered that my body cannot do what it could before having had cancer. | directly measured |
| nhl10a25q16 | I worry about how my body looks. | directly measured |
| nhl10a25q17 | I feel disfigured. | directly measured |
| nhl10a25q18 | I sometimes wear clothing to cover up parts of my body I don’t want others to see. | directly measured |
| nhl10a25q19 | Having had cancer has made me take better care of myself (my health). | directly measured |
| nhl10a25q20 | Having to pay attention to my physical health interferes with my life. | directly measured |
| nhl10a25q21 | I feel a sense of pride or accomplishment from surviving cancer. | directly measured |
| nhl10a25q22 | I learned something about myself because of having had cancer. | directly measured |
| nhl10a25q24 | I feel guilty for somehow being responsible for getting cancer. | directly measured |
| nhl10a25q25 | I feel that I am a role model to other people with cancer. | directly measured |
| nhl10a25q26 | Having had cancer has made me feel old. | directly measured |
| nhl10a25q27 | I feel guilty today for not having been available to my family when I had cancer. | directly measured |
| nhl10a25q28 | Having had cancer has been the most difficult experience in my life. | directly measured |
| nhl10a25q29 | I wonder why I got cancer. | directly measured |
| nhl10a25q30 | It is important for me to know why I got cancer. | directly measured |
| nhl10a25q31 | Having had cancer turned into a reason to make changes in my life | directly measured |
| nhl10a25q32 | Because of cancer I have become better about expressing what I want. | directly measured |
| nhl10a25q33 | Because of cancer I have more confidence in myself. | directly measured |
| nhl10a25q34 | Having had cancer has given me direction in life. | directly measured |
| nhl10a25q35 | I place a higher value on my relationships with family or friends than I did before having had cancer. | directly measured |
| nhl10a25q36 | I feel a special bond with people with cancer. | directly measured |
| nhl10a25q37 | Because I had cancer I am more understanding of what other people may feel when they are seriously ill. | directly measured |
| nhl10a25q38 | Having had cancer has made me more willing to help others. | directly measured |
| nhl10a25q39 | I feel that I should give something back to others because I survived cancer. | directly measured |
| nhl10a25q40 | Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family). | directly measured |
| nhl10a25q41 | On-going cancer-related or treatment-related symptoms interfere with my life. | directly measured |
| nhl10a25s01 | Physical: health awareness | derived |
| nhl10a25s02 | Physical: body changes | derived |
| nhl10a25s03 | Psychological: positive self-evaluation | derived |
| nhl10a25s04 | Psychological: negative self-evaluation | derived |
| nhl10a25s05 | Existential: positive outlook | derived |
| nhl10a25s06 | Existential: negative outlook | derived |
| nhl10a25s07 | Social: life interferences | derived |
| nhl10a25s08 | Social: value of relationships | derived |
| nhl10a25s09 | IOC meaning of cancer | derived |
| nhl10a25s10 | IOC health worry | derived |
| nhl10a25s11 | IOC positive higher order scale score | derived |
| nhl10a25s12 | IOC negative higher order scale score | derived |
Questions
Questionnaire: Quality of life Hodgkin lymphoma
The questionnaire was originally conducted in Dutch.
Browse Quality of life Hodgkin lymphomaResponse Information
Response Overview
The questionnaire was submitted to 655 patients of 18 years and older. 508 patients completed the questionnaire (78%).Collection Events
Period
01-05-2010 to 31-07-2010
Sample
The questionnaire was submitted to 655 patients who were diagnosed with Non-Hodgkin lymphoma between 1999 and 2009.
Collection Mode
Mixed-mode survey
Fieldwork Note
A reminder was sent one to non-respondents.
Please note: Patients who were diagnosed more than 3 years ago have to fill in some additional questions about education, length, contact with general practitioner/specialists, care after cancer and influence of cancer. Patients who were recently (0-3 years) diagnosed didn't get these additional questions.