Longitudinal Wave

General Information

Title
Quality of life non-Hodgkin lymphoma May 2009
Project Number
5.1a
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)

Codebooks and other materials

View Documentation

Codebook in English

Variables

Variable name Variable Label Variable Type
nhl09a01pat_idPatiënt identifierpreloaded
nhl09a01responseResponse statusderived
nhl09a01gendGenderpreloaded
nhl09a01agequesAge category at time of questionnaireconstructed
nhl09a01ageincAge category at time of diagnosisconstructed
nhl09a01yrsdiagTime passed since diagnosisconstructed
nhl09a01treatmentType of treatmentpreloaded
nhl04a01stageStagepreloaded
nhl09a01bmiBMIderived
nhl09a01SES3SES status in 3(4) categoriespreloaded
nhl09a02q01What is currently your marital status?directly measured
nhl09a02q02Indicate below which is your highest education level.directly measured
nhl09a06q01Do you have a paid job at this moment?directly measured
nhl09a06q02Paid job hours/weekdirectly measured
nhl09a06q03If you do not have a paid job, which of the following reasons is most applicable to your situation?directly measured
nhl09a05q01How many times did you have contact with your general practitioner in the past 12 months?directly measured
nhl09a05q02How many of these contact moments had to do with cancer or the aftermath of cancer?directly measured
nhl09a05q03How many times did you have contact with your specialist in the past 12 months?directly measured
nhl09a05q04How many of these contact moments had to do with cancer or the aftermath of cancer?directly measured
nhl09a05q05Do you still have follow up appointments?directly measured
nhl09a05q06Did you discuss with your specialist how often you have to come back from this moment on?directly measured
nhl09a05q07Do you feel comfortable with this follow up scheme?directly measured
nhl09a05q08Did you receive care after the treatment of your illness?directly measured
nhl09a05q09Did you receive extra care from a psychologist?directly measured
nhl09a05q10Did you receive extra care from a sexologist?directly measured
nhl09a05q11Did you receive extra care from a social worker?directly measured
nhl09a05q12Did you receive extra care from pastoral care?directly measured
nhl09a05q13Did you receive extra care from a General Practitioner?directly measured
nhl09a05q14Did you receive extra care from a dietist?directly measured
nhl09a05q15Did you receive extra care from a physiotherapis?directly measured
nhl09a05q16Did you receive extra care from a recovery program?directly measured
nhl09a05q17Did you receive extra care from creative therapy?directly measured
nhl09a05q18Did you receive extra care from an oncological nurse?directly measured
nhl09a05q19Did you receive extra care from a peer group?directly measured
nhl09a07q01Do you have, or did you have in the past 12 months: heart conditiondirectly measured
nhl09a07q15Are you being treated for: heart conditiondirectly measured
nhl09a07q29Does the condition interfere with your activities: heart conditiondirectly measured
nhl09a07q02Do you have, or did you have in the past 12 months: strokedirectly measured
nhl09a07q16Are you being treated for: strokedirectly measured
nhl09a07q30Does the condition interfere with your activities: strokedirectly measured
nhl09a07q03Do you have, or did you have in the past 12 months: high blood pressuredirectly measured
nhl09a07q17Are you being treated for: high blood pressuredirectly measured
nhl09a07q31Does the condition interfere with your activities: high blood pressuredirectly measured
nhl09a07q04Do you have, or did you have in the past 12 months: asthma, chronic bronchitis, COPDdirectly measured
nhl09a07q18Are you being treated for: asthma, chronic bronchitis, COPDdirectly measured
nhl09a07q32Does the condition interfere with your activities: asthma, chronic bronchitis, COPDdirectly measured
nhl09a07q05Do you have, or did you have in the past 12 months: diabetesdirectly measured
nhl09a07q19Are you being treated for: diabetesdirectly measured
nhl09a07q33Does the condition interfere with your activities: diabetesdirectly measured
nhl09a07q06Do you have, or did you have in the past 12 months: ulcerdirectly measured
nhl09a07q20Are you being treated for: ulcerdirectly measured
nhl09a07q34Does the condition interfere with your activities: ulcerdirectly measured
nhl09a07q07Do you have, or did you have in the past 12 months: kidney diseasedirectly measured
nhl09a07q21Are you being treated for: kidney diseasedirectly measured
nhl09a07q35Does the condition interfere with your activities: kidney diseasedirectly measured
nhl09a07q08Do you have, or did you have in the past 12 months: liver diseasedirectly measured
nhl09a07q22Are you being treated for: liver diseasedirectly measured
nhl09a07q36Does the condition interfere with your activities: liver diseasedirectly measured
nhl09a07q09Do you have, or did you have in the past 12 months: anemia or other blood conditiondirectly measured
nhl09a07q23Are you being treated for: anemia or other blood conditiondirectly measured
nhl09a07q37Does the condition interfere with your activities: anemia or other blood conditiondirectly measured
nhl09a07q10Do you have, or did you have in the past 12 months: thyroid diseasedirectly measured
nhl09a07q24Are you being treated for: thyroid diseasedirectly measured
nhl09a07q38Does the condition interfere with your activities: thyroid diseasedirectly measured
nhl09a07q11Do you have, or did you have in the past 12 months: depressiondirectly measured
nhl09a07q25Are you being treated for: depressiondirectly measured
nhl09a07q39Does the condition interfere with your activities: depressiondirectly measured
nhl09a07q12Do you have, or did you have in the past 12 months: arthritisdirectly measured
nhl09a07q26Are you being treated for: arthritisdirectly measured
nhl09a07q40Does the condition interfere with your activities: arthritisdirectly measured
nhl09a07q13Do you have, or did you have in the past 12 months: backachedirectly measured
nhl09a07q27Are you being treated for: backachedirectly measured
nhl09a07q41Does the condition interfere with your activities: backachedirectly measured
nhl09a07q14Do you have, or did you have in the past 12 months: rheumatismdirectly measured
nhl09a07q28Are you being treated for: rheumatismdirectly measured
nhl09a07q42Does the condition interfere with your activities: rheumatismdirectly measured
nhl09a06q04Which changes have you experienced in your work situation due to cancer?directly measured
nhl09a06q05Did you have trouble finding (additional) health insurance, because of cancer?directly measured
nhl09a06q06You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?directly measured
nhl09a06q07Did you have trouble getting life insurance, because of cancer?directly measured
nhl09a06q08You have indicated that you have had trouble getting life insurance. What was the outcome?directly measured
nhl09a06q09Did you have trouble getting mortgage, because of cancer?directly measured
nhl09a06q10You have indicated that you have had trouble getting mortgage. What was the outcome?directly measured
nhl09a09q01Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?directly measured
nhl09a09q02Do you have any trouble taking a long walk?directly measured
nhl09a09q03you have any trouble taking a short walk outside of the house?directly measured
nhl09a09q04Do you need to stay in bed or a chair during the day?directly measured
nhl09a09q05you need help with eating, dressing, washing yourself or using the toilet?directly measured
nhl09a09q06Were you limited in doing either your work or other daily activities during the past week?directly measured
nhl09a09q07Were you limited in pursuing your hobbies or other leisure time activities during the past week?directly measured
nhl09a09q08Were you short of breath during the past week?directly measured
nhl09a09q09Have you had pain during the past week?directly measured
nhl09a09q10Did you need to rest during the past week?directly measured
nhl09a09q11Have you had trouble sleeping during the past week?directly measured
nhl09a09q12Have you felt weak during the past week?directly measured
nhl09a09q13Have you lacked appetite during the past week?directly measured
nhl09a09q14Have you felt nauseated during the past week?directly measured
nhl09a09q15Have you vomited during the past week?directly measured
nhl09a09q16Have you been constipated during the past week?directly measured
nhl09a09q17Have you had diarrhea during the past week?directly measured
nhl09a09q18Were you tired during the past week?directly measured
nhl09a09q19Did pain interfere with your daily activities during the past week?directly measured
nhl09a09q20Have you had difficulty in concentrating on things, like reading a newspaper or watching television during the past week?directly measured
nhl09a09q21Did you feel tense during the past week?directly measured
nhl09a09q22Did you worry during the past week?directly measured
nhl09a09q23Did you feel irritable during the past week?directly measured
nhl09a09q24Did you feel depressed during the past week?directly measured
nhl09a09q25Have you had difficulty remembering things during the past week?directly measured
nhl09a09q26Has your physical condition or medical treatment interfered with your family life during the past week?directly measured
nhl09a09q27Has your physical condition or medical treatment interfered with your social activities during the past week?directly measured
nhl09a09q28Has your physical condition or medical treatment caused you financial difficulties during the past week?directly measured
nhl09a09q29How would you rate your overall health during the past week?directly measured
nhl09a09q30How would you rate your overall quality of life during the past week?directly measured
nhl09a09s01Physical Functioningderived
nhl09a09s02Role Functioningderived
nhl09a09s03Emotional Functioningderived
nhl09a09s04Cognitive Functioningderived
nhl09a09s05Social Functioningderived
nhl09a09s06Global health status / QoLderived
nhl09a09s07Fatiguederived
nhl09a09s08Nausea / Vomitingderived
nhl09a09s09Painderived
nhl09a09s10Dyspnoeaderived
nhl09a09s11Insomniaderived
nhl09a09s12Appetite lossderived
nhl09a09s13Constipationderived
nhl09a09s14Diarrheaderived
nhl09a09s15Financial Problemsderived
nhl09a11q01Have you lost weight during the past week?directly measured
nhl09a11q02Have you had a dry mouth during the past week?directly measured
nhl09a11q03Did you bruise during the past week?directly measured
nhl09a11q04Did you have abdominal discomfort during the past week?directly measured
nhl09a11q05Had your temperature been going up and down during the past week?directly measured
nhl09a11q06Did you have night sweats during the past week?directly measured
nhl09a11q07Have you had skin problems (e.g. itchy or dry) during the past week?directly measured
nhl09a11q08Have you felt ill or unwell during the past week?directly measured
nhl09a11q09Have you felt lethargic during the past week?directly measured
nhl09a11q10Have you felt \"slowed down\" during the past week?directly measured
nhl09a11q11Did you have tingling hands or feet during the past week?directly measured
nhl09a11q12Were you limited in planning activities (for example meeting friends) during the past week?directly measured
nhl09a11q13Have you worried about your health in the future during the past week?directly measured
nhl09a11q14Have you had trouble with chest infections during the past week?directly measured
nhl09a11q15Have you had trouble with other infections during the past week?directly measured
nhl09a11q16Have you needed repeated courses of antibiotics during the past week?directly measured
nhl09a11q17Have you worried about picking up an infection during the past week?directly measured
nhl09a20q01Mobilitydirectly measured
nhl09a20q02Self caredirectly measured
nhl09a20q03Daily affairs (for example work, school, householding, family- and leisure activities)directly measured
nhl09a20q04Pain / troublesdirectly measured
nhl09a20q05Mooddirectly measured
nhl09a21q01I make contact easily when I meet people.directly measured
nhl09a21q02I often make a fuss about unimportant things.directly measured
nhl09a21q03I often talk to strangers.directly measured
nhl09a21q04I often feel unhappy.directly measured
nhl09a21q05I am often irritated.directly measured
nhl09a21q06I often feel inhibited in social interactions.directly measured
nhl09a21q07I take a gloomy view on things.directly measured
nhl09a21q08I find it hard to start a conversation.directly measured
nhl09a21q09I am often in a bad mood.directly measured
nhl09a21q10I am a closed kind of person.directly measured
nhl09a21q11I would rather keep other people at a distance.directly measured
nhl09a21q12I often find myself worrying about something.directly measured
nhl09a21q13I am often down in the dumps.directly measured
nhl09a21q14When socializing, I don’t find the right things to talk about.directly measured
nhl09a21s01Social inhibition subscalederived
nhl09a21s02Negative affect subscalederived
nhl09a21s03Type D Personalityderived
nhl09a22q01How much does your illness affect your life?directly measured
nhl09a22q02How long do you think your illness will continue?directly measured
nhl09a22q03How much control do you feel you have over your illness?directly measured
nhl09a22q04How much do you think your treatment can help your illness?directly measured
nhl09a22q05How much do you experience symptoms from your illness?directly measured
nhl09a22q06How concerned are you about your illness?directly measured
nhl09a22q07How well do you feel you understand your illness?directly measured
nhl09a22q08How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?directly measured
nhl09a23q01I am bothered by fatiguedirectly measured
nhl09a23q02I get tired very quicklydirectly measured
nhl09a23q03I don’t do much during the daydirectly measured
nhl09a23q04I have enough energy for everyday lifedirectly measured
nhl09a23q05Physically, I feel exhausteddirectly measured
nhl09a23q06I have problems starting thingsdirectly measured
nhl09a23q07I have problems thinking clearlydirectly measured
nhl09a23q08I feel no desire to do anythingdirectly measured
nhl09a23q09Mentally, I feel exhausteddirectly measured
nhl09a23q10When I am doing something, I can concentrate quite welldirectly measured
nhl09a23s01FAS total scorederived
nhl09a24q01I feel tense or ‘wound up’directly measured
nhl09a24q02I still enjoy the things I used to enjoydirectly measured
nhl09a24q03I get a sort of frightened feeling as if something awful is about to happendirectly measured
nhl09a24q04I can laugh and see the funny side of thingsdirectly measured
nhl09a24q05Worrying thoughts go through my minddirectly measured
nhl09a24q06I feel cheerfuldirectly measured
nhl09a24q07I can sit at ease and feel relaxeddirectly measured
nhl09a24q08I feel as if I am slowed downdirectly measured
nhl09a24q09I get a sort of frightened feeling like ‘butterflies’ in the stomachdirectly measured
nhl09a24q10I have lost interest in my appearancedirectly measured
nhl09a24q11I feel restless, as if I have to be on the movedirectly measured
nhl09a24q12I look forward with enjoyment to thingsdirectly measured
nhl09a24q13I get sudden feelings of panicdirectly measured
nhl09a24q14I can enjoy a good book or radio or TV programdirectly measured
nhl09a24s01Anxiety total scorederived
nhl09a24s02Depression total scorederived
nhl09a25q01I learned something about life because of having had cancerdirectly measured
nhl09a25q02Having had cancer makes me feel unsure about my futuredirectly measured
nhl09a25q03I worry about my futuredirectly measured
nhl09a25q04I am afraid to diedirectly measured
nhl09a25q05I feel like time in my life is running outdirectly measured
nhl09a25q06Having had cancer has made me realize that time is preciousdirectly measured
nhl09a25q07Having had cancer has strengthened my religious faith or my sense of spiritualitydirectly measured
nhl09a25q08I do not take my body for granted since the cancerdirectly measured
nhl09a25q09Having had cancer has made me more concerned about my healthdirectly measured
nhl09a25q10I am more aware of physical problems or changes in my body since having had cancerdirectly measured
nhl09a25q11I worry about my healthdirectly measured
nhl09a25q12I worry about the cancer coming back or about getting another cancerdirectly measured
nhl09a25q13New symptoms (aches, pains, getting sick or the flu) make me worry about the cancer coming backdirectly measured
nhl09a25q14I am concerned that my energy has not returned to what it was before I had cancerdirectly measured
nhl09a25q15I am bothered that my body cannot do what it could before having had cancerdirectly measured
nhl09a25q16I worry about how my body looksdirectly measured
nhl09a25q17I feel disfigureddirectly measured
nhl09a25q18I sometimes wear clothing to cover up parts of my body I don’t want others to seedirectly measured
nhl09a25q19Having had cancer has made me take better care of myself (my health)directly measured
nhl09a25q20Having to pay attention to my physical health interferes with my lifedirectly measured
nhl09a25q21I feel a sense of pride or accomplishment from surviving cancerdirectly measured
nhl09a25q22I learned something about myself because of having had cancerdirectly measured
nhl09a25q24I feel guilty for somehow being responsible for getting cancerdirectly measured
nhl09a25q25I feel that I am a role model to other people with cancerdirectly measured
nhl09a25q26Having had cancer has made me feel olddirectly measured
nhl09a25q27I feel guilty today for not having been available to my family when I had cancerdirectly measured
nhl09a25q28Having had cancer has been the most difficult experience in my lifedirectly measured
nhl09a25q29I wonder why I got cancerdirectly measured
nhl09a25q30It is important for me to know why I got cancerdirectly measured
nhl09a25q31Having had cancer turned into a reason to make changes in my lifedirectly measured
nhl09a25q32Because of cancer I have become better about expressing what I wantdirectly measured
nhl09a25q33Because of cancer I have more confidence in myselfdirectly measured
nhl09a25q34Having had cancer has given me direction in lifedirectly measured
nhl09a25q35I place a higher value on my relationships with family or friends than I did before having had cancerdirectly measured
nhl09a25q36I feel a special bond with people with cancerdirectly measured
nhl09a25q37Because I had cancer I am more understanding of what other people may feel when they are seriously illdirectly measured
nhl09a25q38Having had cancer has made me more willing to help othersdirectly measured
nhl09a25q39I feel that I should give something back to others because I survived cancerdirectly measured
nhl09a25q40Having had cancer keeps me from doing activities I enjoy (examples: travel, socializing, recreation, time with family)directly measured
nhl09a25q41On-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 lifedirectly measured
nhl09a25s01Physical: health awarenessderived
nhl09a25s02Physical: body changesderived
nhl09a25s03Psychological: positive self-evaluationderived
nhl09a25s04Psychological: negative self-evaluationderived
nhl09a25s05Existential: positive outlookderived
nhl09a25s06Existential: negative outlookderived
nhl09a25s07Social: life interferencesderived
nhl09a25s08Social: value of relationshipsderived
nhl09a25s09IOC meaning of cancerderived
nhl09a25s10IOC health worryderived
nhl09a25s11IOC higher order positive scalederived
nhl09a25s12IOC higher order negative scalederived
nhl09a26q01During your current disease or treatment, how much information have you received on the diagnosis of your disease?directly measured
nhl09a26q02During your current disease or treatment, how much information have you received on the extent (spread) of your disease?directly measured
nhl09a26q03During your current disease or treatment, how much information have you received on the possible causes of your disease?directly measured
nhl09a26q04During your current disease or treatment, how much information have you received on whether the disease is under control?directly measured
nhl09a26q05During 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
nhl09a26q06During your current disease or treatment, how much information have you received on the procedures of the medical tests?directly measured
nhl09a26q07During your current disease or treatment, how much information have you received on the results of the medical tests you have already received?directly measured
nhl09a26q08During your current disease or treatment, how much information have you received on the medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)?directly measured
nhl09a26q09During your current disease or treatment, how much information have you received on non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)?directly measured
nhl09a26q10During your current disease or treatment, how much information have you received on the expected benefit of the treatment?directly measured
nhl09a26q11During your current disease or treatment, how much information have you received on the possible side-effects of your treatment?directly measured
nhl09a26q12During your current disease or treatment, how much information have you received on the expected effects of the treatment on disease symptoms?directly measured
nhl09a26q13During your current disease or treatment, how much information have you received on the effects of the treatment on social and family life?directly measured
nhl09a26q14During your current disease or treatment, how much information have you received on the effects of the treatment on sexual activity?directly measured
nhl09a26q15During 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
nhl09a26q16During your current disease or treatment, how much information have you received on rehabilitation services (e. g. physiotherapy, occupational therapy)?directly measured
nhl09a26q17During your current disease or treatment, how much information have you received on aspects of managing your illness at home?directly measured
nhl09a26q18During your current disease or treatment, how much information have you received on possible professional psychological support?directly measured
nhl09a26q19During your current disease or treatment, how much information have you received on different places of care (hospitals/outpatient services/home)?directly measured
nhl09a26q20During 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
nhl09a26q21Have you received written information?directly measured
nhl09a26q22Have you received information on CD or tape / video?directly measured
nhl09a26q23Were you satisfied with the amount of information you received?directly measured
nhl09a26q24Do you wish to receive more information?directly measured
nhl09a26q25Do you wish that you had received less information?directly measured
nhl09a26q26Overall has the information you have received been helpful?directly measured
nhl09a26s01Information on your diseasederived
nhl09a26s02Information on your medical testsderived
nhl09a26s03Information on treatment/your treatmentsderived
nhl09a26s04Information on other servicesderived
nhl09a26s05Information on other areas/places of carederived
nhl09a26s06Information on things patient can do to get wellderived
nhl09a26s07Written informationderived
nhl09a26s08Information on cd, tape, videoderived
nhl09a26s09Satisfaction with informationderived
nhl09a26s10Desire to receive more informationderived
nhl09a26s11Desire to receive less informationderived
nhl09a26s12Helpfulness of informationderived
nhl09a27q01Do you use the internet?directly measured
nhl09a27q02Did you use the internet to find information about non-Hodgkin lymphoma?directly measured

Questions

Questionnaire: Quality of life non-Hodgkin lymphoma

The questionnaire was originally conducted in Dutch.

Browse Quality of life non-Hodgkin lymphoma

Response Information

Response Overview
The questionnaire was submitted to 898 patients of 18 years and older. 715 patients completed the questionnaire (reponse rate 80%).
Collection Events
Period
01-05-2009 to 01-08-2009
Sample
Patients diagnosed with non-Hodgkin lymphoma 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.