Longitudinal Wave
General Information
Title
Quality of life non-Hodgkin lymphoma November 2009
Project Number
5.2a
Longitudinal Type
Longitudinal Wave
Begin date
01-11-2009
End date
28-02-2010
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 |
|---|---|---|
| nhl09b01pat_id | Patient identifier | preloaded |
| nhl09b01response | Response status | derived |
| nhl09b01gend | Gender | preloaded |
| nhl09b01ageques | Age category at time of questionnaire | constructed |
| nhl09b01ageinc | Age category at time of diagnosis | constructed |
| nhl09b01yrsdiag | Survival time in categories | derived |
| nhl09b01tumor | NHL=non-Hodgkin lymphoma, CLL=chronic lymfatic leukemia | preloaded |
| nhl09b01treatment | Primary treatment | preloaded |
| nhl04a01stage | Stage | preloaded |
| nhl09b01length | Length | derived |
| Nhl09b01weight | Weight | derived |
| nhl09b01bmi | Body Mass Index | derived |
| nhl09b01SES3 | SES status in 3(4) categories | preloaded |
| nhl09b02q01 | What is currently your marital status? | directly measured |
| nhl09b02q02 | Indicate below which is your highest education level. | directly measured |
| nhl09b06q01 | Do you have a paid job at this moment? | directly measured |
| nhl09b06q02 | Paid job hours/week | directly measured |
| nhl09b06q03 | If you do not have a paid job, which of the following reasons is most applicable to your situation? | directly measured |
| nhl09b06q04 | Percentage of incapacity | directly measured |
| nhl09b06q05 | Due to cancer? | directly measured |
| nhl09b03q01 | Do you smoke? | directly measured |
| nhl09b03q02 | How many years ago did you quit | directly measured |
| nhl09b03q03 | Number of cigarettes per day | directly measured |
| nhl09b03q04 | Number of cigars per week | directly measured |
| nhl09b03q05 | Number of packages of pipe tobacco (50 grams) per week | directly measured |
| nhl09b03q06 | Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months? | directly measured |
| nhl09b03q07 | How many years ago did you quit | directly measured |
| nhl09b03q08 | Number of glasses of beer per week | directly measured |
| nhl09b03q09 | Number of glasses of wine or port wine per week | directly measured |
| nhl09b03q10 | Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor) | directly measured |
| nhl09b04q01 | Going for a walk in the summer (also walking to work, shopping, and walking in leisure time) | directly measured |
| nhl09b04q02 | Going for a walk in the winter (also walking to work, shopping, and walking in leisure time) | directly measured |
| nhl09b04q03 | Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time) | directly measured |
| nhl09b04q04 | Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time) | directly measured |
| nhl09b04q05 | Gardening in the summer | directly measured |
| nhl09b04q06 | Gardening in the winter | directly measured |
| nhl09b04q07 | Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children) | directly measured |
| nhl09b04q08 | Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children) | directly measured |
| nhl09b05q01 | How many times did you have contact with your general practitioner in the past 12 months? | directly measured |
| nhl09b05q02 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| nhl09b05q03 | How many times did you have contact with your specialist in the past 12 months? | directly measured |
| nhl09b05q04 | How many of these contact moments had to do with cancer or the aftermath of cancer? | directly measured |
| nhl09b05q05 | Do you still have follow up appointments? | directly measured |
| nhl09b05q06 | Did you discuss with your specialist how often you have to come back from this moment on? | directly measured |
| nhl09b05q07 | Do you feel comfortable with this follow up scheme? | directly measured |
| nhl09b05q08 | Did you receive care after the treatment of your illness? | directly measured |
| nhl09b05q09 | Did you get extra care from a psychologist? | directly measured |
| nhl09b05q10 | Did you get extra care from a sexologist? | directly measured |
| nhl09b05q11 | Did you get extra care from a social worker? | directly measured |
| nhl09b05q12 | Did you get extra care from pastoral care? | directly measured |
| nhl09b05q13 | Did you get extra care from your general practitioner? | directly measured |
| nhl09b05q14 | Did you get extra care from a dietist | directly measured |
| nhl09b05q15 | Did you get extra care from a physiotherapist? | directly measured |
| nhl09b05q16 | Did you get extra care from recovery and balance? | directly measured |
| nhl09b05q17 | Did you get extra care from creative therapy? | directly measured |
| nhl09b05q18 | Did you get extra care from an oncological nurse? | directly measured |
| nhl09b05q19 | Did you get extra care from a peer group | directly measured |
| nhl09b05q20 | Did you get extra care from someone else? | directly measured |
| nhl09b07q01 | 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 |
| nhl09b07q02 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Stroke | directly measured |
| nhl09b07q03 | 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 |
| nhl09b07q04 | 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 |
| nhl09b07q05 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Diabetes | directly measured |
| nhl09b07q06 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Ulcer | directly measured |
| nhl09b07q07 | 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 |
| nhl09b07q08 | 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 |
| nhl09b07q09 | 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 |
| nhl09b07q10 | 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 |
| nhl09b07q11 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Depression | directly measured |
| nhl09b07q12 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Arthritis | directly measured |
| nhl09b07q13 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Backache | directly measured |
| nhl09b07q14 | Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Rheumatism | directly measured |
| nhl09b07q15 | Are you being treated for your heart condition? | directly measured |
| nhl09b07q16 | Are you being treated for your stroke? | directly measured |
| nhl09b07q17 | Are you being treated for your high blood pressure? | directly measured |
| nhl09b07q18 | Are you being treated for your asthma, chronic bronchitis or COPD? | directly measured |
| nhl09b07q19 | Are you being treated for your diabetes? | directly measured |
| nhl09b07q20 | Are you being treated for your ulcer? | directly measured |
| nhl09b07q21 | Are you being treated for your kidney disease? | directly measured |
| nhl09b07q22 | Are you being treated for your liver disease? | directly measured |
| nhl09b07q23 | Are you being treated for your anemia or other blood condition? | directly measured |
| nhl09b07q24 | Are you being treated for your thyroid disease? | directly measured |
| nhl09b07q25 | Are you being treated for your depression? | directly measured |
| nhl09b07q26 | Are you being treated for your arthritis? | directly measured |
| nhl09b07q27 | Are you being treated for your backache? | directly measured |
| nhl09b07q28 | Are you being treated for your rheumatism? | directly measured |
| nhl09b07q29 | Does your heart condition interfere with your activities? | directly measured |
| nhl09b07q30 | Does your stroke interfere with your activities? | directly measured |
| nhl09b07q31 | Does your high blood pressure interfere with your activities? | directly measured |
| nhl09b07q32 | Does your asthma, chronic bronchitis or COPD interfere with your activities? | directly measured |
| nhl09b07q33 | Does your diabetes interfere with your activities? | directly measured |
| nhl09b07q34 | Does your ulcer interfere with your activities? | directly measured |
| nhl09b07q35 | Does your kidney disease interfere with your activities? | directly measured |
| nhl09b07q36 | Does your liver disease interfere with your activities? | directly measured |
| nhl09b07q37 | Does your anemia or other blood condition interfere with your activities? | directly measured |
| nhl09b07q38 | Does your thyroid disease interfere with your activities? | directly measured |
| nhl09b07q39 | Does your depression interfere with your activities? | directly measured |
| nhl09b07q40 | Does your arthritis interfere with your activities? | directly measured |
| nhl09b07q41 | Does your backache interfere with your activities? | directly measured |
| nhl09b07q42 | Does your rheumatism interfere with your activities? | directly measured |
| nhl09b06q06 | Which changes have you experienced in your work situation due to cancer? | directly measured |
| nhl09b06q07 | Did you have trouble finding (additional) health insurance, because of cancer? | directly measured |
| nhl09b06q08 | You have indicated that you have had trouble getting (additional) health insurance. What was the outcome? | directly measured |
| nhl09b06q09 | Did you have trouble getting life insurance, because of cancer? | directly measured |
| nhl09b06q10 | You have indicated that you have had trouble getting life insurance. What was the outcome? | directly measured |
| nhl09b06q11 | Did you have trouble getting mortgage, because of cancer? | directly measured |
| nhl09b06q12 | You have indicated that you have had trouble getting mortgage. What was the outcome? | directly measured |
| nhl09b09q01 | Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase? | directly measured |
| nhl09b09q02 | Do you have any trouble taking a long walk? | directly measured |
| nhl09b09q03 | Do you have any trouble taking a short walk outside of the house? | directly measured |
| nhl09b09q04 | Do you need to stay in bed or a chair during the day? | directly measured |
| nhl09b09q05 | Do you need help with eating, dressing, washing yourself or using the toilet? | directly measured |
| nhl09b09q06 | Were you limited in doing either your work or other daily activities? | directly measured |
| nhl09b09q07 | Were you limited in pursuing your hobbies or other leisure time activities | directly measured |
| nhl09b09q08 | Were you short of breath? | directly measured |
| nhl09b09q09 | Have you had pain? | directly measured |
| nhl09b09q10 | Did you need to rest? | directly measured |
| nhl09b09q11 | Have you had trouble sleeping? | directly measured |
| nhl09b09q12 | Have you felt weak? | directly measured |
| nhl09b09q13 | Have you lacked appetite? | directly measured |
| nhl09b09q14 | Have you felt nauseated? | directly measured |
| nhl09b09q15 | Have you vomited? | directly measured |
| nhl09b09q16 | Have you been constipated? | directly measured |
| nhl09b09q17 | Have you had diarrhea? | directly measured |
| nhl09b09q18 | Were you tired? | directly measured |
| nhl09b09q19 | Did pain interfere with your daily activities? | directly measured |
| nhl09b09q20 | Have you had difficulty in concentrating on things, like reading a newspaper or watching television? | directly measured |
| nhl09b09q21 | Did you feel tense? | directly measured |
| nhl09b09q22 | Did you worry? | directly measured |
| nhl09b09q23 | Did you feel irritable? | directly measured |
| nhl09b09q24 | Did you feel depressed? | directly measured |
| nhl09b09q25 | Have you had difficulty remembering things? | directly measured |
| nhl09b09q26 | Has your physical condition or medical treatment interfered with your family life? | directly measured |
| nhl09b09q27 | Has your physical condition or medical treatment interfered with your social activities? | directly measured |
| nhl09b09q28 | Has your physical condition or medical treatment caused you financial difficulties? | directly measured |
| nhl09b09q29 | How would you rate your overall health during the past week? | directly measured |
| nhl09b09q30 | How would you rate your overall quality of life during the past week? | directly measured |
| nhl09b09s01 | Physical Function | derived |
| nhl09b09s02 | Role Function | derived |
| nhl09b09s03 | Emotional Function | derived |
| nhl09b09s04 | Cognitive Function | derived |
| nhl09b09s05 | Social Function | derived |
| nhl09b09s06 | Global health status/QoL | derived |
| nhl09b09s07 | Fatigue | derived |
| nhl09b09s08 | Nausea / vomiting | derived |
| nhl09b09s09 | Pain | derived |
| nhl09b09s10 | Dyspnoea | derived |
| nhl09b09s11 | Insomnia | derived |
| nhl09b09s12 | Appetite loss | derived |
| nhl09b09s13 | Constipation | derived |
| nhl09b09s14 | Diarrhea | derived |
| nhl09b09s15 | Financial problems | derived |
| nhl09b11q01 | Have you lost weight? | directly measured |
| nhl09b11q02 | Have you had a dry mouth? | directly measured |
| nhl09b11q03 | Did you bruise? | directly measured |
| nhl09b11q04 | Did you have abdominal discomfort? | directly measured |
| nhl09b11q05 | Has your temperature been going up and down? | directly measured |
| nhl09b11q06 | Did you have night sweats? | directly measured |
| nhl09b11q07 | Have you had skin problems (e.g. itchy, dry)? | directly measured |
| nhl09b11q08 | Did you feel ill or unwell? | directly measured |
| nhl09b11q09 | Did you feel lethargic? | directly measured |
| nhl09b11q10 | Have you felt “slowed down� | directly measured |
| nhl09b11q11 | Did you have tingling hands or feet? | directly measured |
| nhl09b11q12 | Were you limited in planning activities (for example meeting friends)? | directly measured |
| nhl09b11q13 | Have you worried about your health in the future? | directly measured |
| nhl09b11q14 | Have you had trouble with chest infections? | directly measured |
| nhl09b11q15 | Have you had trouble with other infections? | directly measured |
| nhl09b11q16 | Have you needed repeated courses of antibiotics? | directly measured |
| nhl09b11q17 | Have you worried about picking up an infection? | directly measured |
| nhl09b20q01 | Mobility | directly measured |
| nhl09b20q02 | Self care | directly measured |
| nhl09b20q03 | Daily affairs (For example work, school, householding, family- and leisure activities) | directly measured |
| nhl09b20q04 | Pain / troubles | directly measured |
| nhl09b20q05 | Mood | directly measured |
| nhl09b21q01 | I make contact easily when I meet people. | directly measured |
| nhl09b21q02 | I often make a fuss about unimportant things. | directly measured |
| nhl09b21q03 | I often talk to strangers | directly measured |
| nhl09b21q04 | I often feel unhappy | directly measured |
| nhl09b21q05 | I am often irritated | directly measured |
| nhl09b21q06 | I often feel inhibited in social interactions | directly measured |
| nhl09b21q07 | I take a gloomy view on things | directly measured |
| nhl09b21q08 | I find it hard to start a conversation. | directly measured |
| nhl09b21q09 | I am often in a bad mood | directly measured |
| nhl09b21q10 | I am a closed kind of person | directly measured |
| nhl09b21q11 | I would rather keep other people at a distance | directly measured |
| nhl09b21q12 | I often find myself worrying about something | directly measured |
| nhl09b21q13 | I am often down in the dumps | directly measured |
| nhl09b21q14 | When socializing, I don’t find the right things to talk about. | directly measured |
| nhl09b21s01 | DS14 negative affect | derived |
| nhl09b21s02 | DS14 social inhibition | derived |
| nhl09b21s03 | Type D personality | derived |
| nhl09b22q01 | How much does your illness affect your life? | directly measured |
| nhl09b22q02 | How long do you think your illness will continue? | directly measured |
| nhl09b22q03 | How much control do you feel you have over your illness? | directly measured |
| nhl09b22q04 | How much do you think your treatment can help your illness? | directly measured |
| nhl09b22q05 | How much do you experience symptoms from your illness? | directly measured |
| nhl09b22q06 | How concerned are you about your illness? | directly measured |
| nhl09b22q07 | How well do you feel you understand your illness? | directly measured |
| nhl09b22q08 | How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed? | directly measured |
| nhl09b23q01 | I am bothered by fatigue | directly measured |
| nhl09b23q02 | I get tired very quickly | directly measured |
| nhl09b23q03 | I don’t do much during the day | directly measured |
| nhl09b23q04 | I have enough energy for everyday life | directly measured |
| nhl09b23q05 | Physically, I feel exhausted | directly measured |
| nhl09b23q06 | I have problems starting things | directly measured |
| nhl09b23q07 | I have problems thinking clearly | directly measured |
| nhl09b23q08 | I feel no desire to do anything | directly measured |
| nhl09b23q09 | Mentally, I feel exhausted | directly measured |
| nhl09b23q10 | When I am doing something, I can concentrate quite well | directly measured |
| nhl09b23s01 | FAS total score | derived |
| nhl09b24q01 | I feel tense or ‘wound up’ | directly measured |
| nhl09b24q02 | I still enjoy the things I used to enjoy | directly measured |
| nhl09b24q03 | I get a sort of frightened feeling as if something awful is about to happen | directly measured |
| nhl09b24q04 | I can laugh and see the funny side of things | directly measured |
| nhl09b24q05 | Worrying thoughts go through my mind | directly measured |
| nhl09b24q06 | I feel cheerful | directly measured |
| nhl09b24q07 | I can sit at ease and feel relaxed | directly measured |
| nhl09b24q08 | I feel as if I am slowed down | directly measured |
| nhl09b24q09 | I get a sort of frightened feeling like ‘butterflies’ in the stomach | directly measured |
| nhl09b24q10 | I have lost interest in my appearance | directly measured |
| nhl09b24q11 | I feel restless, as if I have to be on the move | directly measured |
| nhl09b24q12 | I look forward with enjoyment to things | directly measured |
| nhl09b24q13 | I get sudden feelings of panic | directly measured |
| nhl09b24q14 | I can enjoy a good book or radio or TV program | directly measured |
| nhl09b24s01 | HADS anxiety | derived |
| nhl09b24s02 | HADS depressie | derived |
| nhl09b26q01 | How much information have you received on: The diagnosis of your disease? | directly measured |
| nhl09b26q02 | How much information have you received on: The extent (spread) of your disease? | directly measured |
| nhl09b26q03 | How much information have you received on: The possible causes of your disease? | directly measured |
| nhl09b26q04 | How much information have you received on: Whether the disease is under control? | directly measured |
| nhl09b26q05 | How much information have you received on: The purpose of any medical tests you have had or may undergo? | directly measured |
| nhl09b26q06 | How much information have you received on: The procedures of the medical tests? | directly measured |
| nhl09b26q07 | How much information have you received on: The results of the medical tests you have already received? | directly measured |
| nhl09b26q08 | How much information have you received on: The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)? | directly measured |
| nhl09b26q09 | How much information have you received on: Non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)? | directly measured |
| nhl09b26q10 | How much information have you received on: The expected benefit of the treatment? | directly measured |
| nhl09b26q11 | How much information have you received on: The possible side-effects of your treatment? | directly measured |
| nhl09b26q12 | How much information have you received on: The expected effects of the treatment on disease symptoms? | directly measured |
| nhl09b26q13 | How much information have you received on: The effects of the treatment on social and family life? | directly measured |
| nhl09b26q14 | How much information have you received on: The effects of the treatment on sexual activity? | directly measured |
| nhl09b26q15 | 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 |
| nhl09b26q16 | How much information have you received on: Rehabilitation services (e. g. physiotherapy, occupational therapy)? | directly measured |
| nhl09b26q17 | How much information have you received on: Aspects of managing your illness at home? | directly measured |
| nhl09b26q18 | How much information have you received on: Possible professional psychological support? | directly measured |
| nhl09b26q19 | How much information have you received on: Different places of care (hospitals/outpatient services/home)? | directly measured |
| nhl09b26q20 | How much information have you received on: Things that you can do to help yourself get well (rest, contact with others..)? | directly measured |
| nhl09b26q21 | Have you received written information? | directly measured |
| nhl09b26q22 | Have you received information on CD or tape / video? | directly measured |
| nhl09b26q23 | Were you satisfied with the amount of information you received? | directly measured |
| nhl09b26q24 | Do you wish to receive more information? | directly measured |
| nhl09b26q25 | Do you wish that you had received less information? | directly measured |
| nhl09b26q26 | Overall has the information you have received been helpful? | directly measured |
| nhl09b26s01 | Information on your disease | derived |
| nhl09b26s02 | Information on your medical tests | derived |
| nhl09b26s03 | Information on treatment/your treatments | derived |
| nhl09b26s04 | Information on other services | derived |
| nhl09b26s05 | Information on other areas/places of care | derived |
| nhl09b26s06 | Information on things patients can do to get well | derived |
| nhl09b26s07 | Written information | derived |
| nhl09b26s08 | Information on cd, tape, video | derived |
| nhl09b26s09 | Satisfaction with information | derived |
| nhl09b26s10 | Desire to receive more information | derived |
| nhl09b26s11 | Desire to receive less information | derived |
| nhl09b26s12 | Helpfulness of information | derived |
| nhl09b27q01 | Do you use the Internet? | directly measured |
| nhl09b27q02 | Did you use the Internet to find information about lymphoma? | directly measured |
Questions
Questionnaire: Quality of life non-Hodgkin lymphoma
The questionnaire was originally conducted in Dutch.
Browse Quality of life non-Hodgkin lymphomaResponse Information
Response Overview
The questionnaire was submitted to 326 patients of 18 years or older. 221 patients completed the questionnaire (response rate 68%)
Collection Events
Period
01-11-2009 to 20-12-2009
Sample
New patients diagnosed with non-Hodgkin lymphoma between 2007 and 2009 in the southern region of the Netherlands. Existing patients previously diagnosed with non-Hodgkin lymphoma between 1999 and 2008 in the southern region of the Netherlands, who had already filled out a questionnaire once.
Collection Mode
paper-and-pencil survey
Fieldwork Note
A reminder was sent once to non-respondents.
Please note: Patients who were new included in the study or were diagnosed more than 3 years ago have to fill in some additional questions about education, length, lifestyle, activities, work and insurance, personality, personal ideas about cancer and satisfaction with information provision. Patients who were already included in the study and were recently (0-3 years) diagnosed didn't get these additional questions.