IKNL Profiles > Quality of life lymphoma > Quality of life non-Hodgkin lymphoma November 2009

Publisher
IKNL Profiles study
Creator
Simone Oerlemans, Lonneke van de Poll-Franse
Created
May 22 2014
Description
Panel
iknl
Begin date
Nov 01 2009

Name English Dutch
Intro Life after cancer Please fill in the questionnaire by yourself, in your own pace. You can answer the questions by checking the box/number …
02q01 What is currently your marital status?
02q02 Indicate below which is your highest education level.
06q01 Do you have a paid job at this moment?
06q02 Paid job hours/week as employee
06q03 If you do not have a paid job, which of the following reasons is most applicable to your situation?
06q04 Percentage of incapacity
06q05 Due to cancer?
03q01 Do you smoke?
03q02 How long has it been you’ve quit smoking?
03q03 Number of cigarettes per day
03q04 Number of cigars per week
03q05 Number of packages of pipe tobacco (50 grams) per week
03q06 Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months?
03q07 How long has it been you’ve quit drinking alcohol?
03q08 Number of glasses of beer per week
03q09 Number of glasses of wine or port wine per week
03q10 Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor)
04q01 - 04q08 Can you indicate in the table below how many hours you have spend on average on a weekly basis on the following activities in the past summ…
04q01 Going for a walk in the summer (also walking to work, shopping, and walking in leisure time)
04q02 Going for a walk in the winter (also walking to work, shopping, and walking in leisure time)
04q03 Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time)
04q04 Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time)
04q05 Gardening in the summer
04q06 Gardening in the winter
04q07 Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children)
04q08 Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children)
05q01 How many times did you have contact with your general practitioner in the past 12 months?
05q02 How many of these contact moments had to do with cancer or the aftermath of cancer?
05q03 How many times did you have contact with your specialist in the past 12 months?
05q04 How many of these contact moments had to do with cancer or the aftermath of cancer?
05q05 Do you still have follow up appointments?
05q06 Did you discuss with your specialist how often you have to come back from this moment on?
05q07 Do you feel comfortable with this follow up scheme?
05q08 Did you receive care after the treatment of your illness?
05q09 - 05q20 From who did you receive care after the treatment of your ilness?
07q01 - 07q14 Below you see a list of chronic conditions and diseases. Please indicate for each condition or disease whether you have it now or have had …
07q15 - 07q28 Please indicate for each condition if you are treated for it or not.
07q29 - 07q42 Please indicate for each condition whether it interferes with your activities or not.
06q06 Which changes have you experienced in your work situation due to cancer?
06q07 Did you have trouble finding (additional) health insurance, because of cancer?
06q08 You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?
06q09 Did you have trouble getting life insurance, because of cancer?
06q10 You have indicated that you have had trouble getting life insurance. What was the outcome?
06q11 Did you have trouble getting mortgage, because of cancer?
06q12 You have indicated that you have had trouble getting mortgage. What was the outcome?
Intro2 Instruction: We are interested in certain things about you and your health. Please answer each question by checking the box in the indicate…
09q01-09q30 During the past week:
11q01 - 11q13 Symptoms or problems. Patients sometimes report that they have the following symptoms or problems. Please indicate the extent to which you …
11q14 - 11q17 Symptoms or problems. Patients sometimes report that they have the following symptoms or problems. Please indicate the extent to which you …
20q01 Mobility
20q02 Self care
20q03 Daily affairs (For example work, school, householding, family- and leisure activities)
20q04 Pain / troubles
20q05 Mood
21q01 - 21q14 Below are a number of statements that people often use to describe themselves. Please read each statement and then circle the appropriate n…
Intro3 Perception. For the following questions, please circle the number that best corresponds to your views.
22q01 How much does your illness affect your life?
22q02 How long do you think your illness will continue?
22q03 How much control do you feel you have over your illness?
22q04 How much do you think your treatment can help your illness?
22q05 How much do you experience symptoms from your illness?
22q06 How concerned are you about your illness?
22q07 How well do you feel you understand your illness?
22q08 How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?
23q01 - 23q10 Fatigue
Intro4 Anxiety and depression. The following questions are about how you feel right now. Please choose the answer that best describes your current…
24q01 I feel tense or ‘wound up’
24q02 I still enjoy the things I used to enjoy
24q03 I get a sort of frightened feeling as if something awful is about to happen
24q04 I can laugh and see the funny side of things
24q05 Worrying thoughts go through my mind
24q06 I feel cheerful
24q07 I can sit at ease and feel relaxed
24q08 I feel as if I am slowed down
24q09 I get a sort of frightened feeling like ‘butterflies’ in the stomach
24q10 I have lost interest in my appearance
24q11 I feel restless, as if I have to be on the move
24q12 I look forward with enjoyment to things
24q13 I get sudden feelings of panic
24q14 I can enjoy a good book or radio or TV program
Intro5 Information. To improve healthcare, we would like to know what information you received about the various aspects of your illness and its t…
26q01 - 26q20 During your current disease or treatment, how much information have you received on:
26q21 Have you received written information?
26q22 Have you received information on CD or tape / video?
26q23 Were you satisfied with the amount of information you received?
26q24 Do you wish to receive more information?
26q25 Do you wish that you had received less information?
26q26 Overall has the information you have received been helpful?
27q01 Do you use the Internet?
27q02 Did you use the Internet to find information about Hodgkin lymphoma?

Variable Dataset English Dutch
nhl09b01pat_id nhl09b_EN_1.0.sav Patient identifier
nhl09b01response nhl09b_EN_1.0.sav Response status
nhl09b01gend nhl09b_EN_1.0.sav Gender
nhl09b01ageques nhl09b_EN_1.0.sav Age category at time of questionnaire
nhl09b01ageinc nhl09b_EN_1.0.sav Age category at time of diagnosis
nhl09b01yrsdiag nhl09b_EN_1.0.sav Survival time in categories
nhl09b01tumor nhl09b_EN_1.0.sav NHL=non-Hodgkin lymphoma, CLL=chronic lymfatic leukemia
nhl09b01treatment nhl09b_EN_1.0.sav Primary treatment
nhl04a01stage nhl09b_EN_1.0.sav Stage
nhl09b01length nhl09b_EN_1.0.sav Length
Nhl09b01weight nhl09b_EN_1.0.sav Weight
nhl09b01bmi nhl09b_EN_1.0.sav Body Mass Index
nhl09b01SES3 nhl09b_EN_1.0.sav SES status in 3(4) categories
nhl09b02q01 nhl09b_EN_1.0.sav What is currently your marital status?
nhl09b02q02 nhl09b_EN_1.0.sav Indicate below which is your highest education level.
nhl09b06q01 nhl09b_EN_1.0.sav Do you have a paid job at this moment?
nhl09b06q02 nhl09b_EN_1.0.sav Paid job hours/week
nhl09b06q03 nhl09b_EN_1.0.sav If you do not have a paid job, which of the following reasons is most applicable to your situation?
nhl09b06q04 nhl09b_EN_1.0.sav Percentage of incapacity
nhl09b06q05 nhl09b_EN_1.0.sav Due to cancer?
nhl09b03q01 nhl09b_EN_1.0.sav Do you smoke?
nhl09b03q02 nhl09b_EN_1.0.sav How many years ago did you quit
nhl09b03q03 nhl09b_EN_1.0.sav Number of cigarettes per day
nhl09b03q04 nhl09b_EN_1.0.sav Number of cigars per week
nhl09b03q05 nhl09b_EN_1.0.sav Number of packages of pipe tobacco (50 grams) per week
nhl09b03q06 nhl09b_EN_1.0.sav Can you state how many glasses of alcoholic drinks you drank on average per week in the past 12 months?
nhl09b03q07 nhl09b_EN_1.0.sav How many years ago did you quit
nhl09b03q08 nhl09b_EN_1.0.sav Number of glasses of beer per week
nhl09b03q09 nhl09b_EN_1.0.sav Number of glasses of wine or port wine per week
nhl09b03q10 nhl09b_EN_1.0.sav Number of glasses of liquor per week (eg. cognac, gin, whiskey, liquor)
nhl09b04q01 nhl09b_EN_1.0.sav Going for a walk in the summer (also walking to work, shopping, and walking in leisure time)
nhl09b04q02 nhl09b_EN_1.0.sav Going for a walk in the winter (also walking to work, shopping, and walking in leisure time)
nhl09b04q03 nhl09b_EN_1.0.sav Riding a bike in the summer (also riding a bike to work, shopping, and cycling in leisure time)
nhl09b04q04 nhl09b_EN_1.0.sav Riding a bike in the winter (also riding a bike to work, shopping, and cycling in leisure time)
nhl09b04q05 nhl09b_EN_1.0.sav Gardening in the summer
nhl09b04q06 nhl09b_EN_1.0.sav Gardening in the winter
nhl09b04q07 nhl09b_EN_1.0.sav Keeping house in the summer (for example laundry, cleaning, cooking, taking care of children)
nhl09b04q08 nhl09b_EN_1.0.sav Keeping house in the winter (for example laundry, cleaning, cooking, taking care of children)
nhl09b05q01 nhl09b_EN_1.0.sav How many times did you have contact with your general practitioner in the past 12 months?
nhl09b05q02 nhl09b_EN_1.0.sav How many of these contact moments had to do with cancer or the aftermath of cancer?
nhl09b05q03 nhl09b_EN_1.0.sav How many times did you have contact with your specialist in the past 12 months?
nhl09b05q04 nhl09b_EN_1.0.sav How many of these contact moments had to do with cancer or the aftermath of cancer?
nhl09b05q05 nhl09b_EN_1.0.sav Do you still have follow up appointments?
nhl09b05q06 nhl09b_EN_1.0.sav Did you discuss with your specialist how often you have to come back from this moment on?
nhl09b05q07 nhl09b_EN_1.0.sav Do you feel comfortable with this follow up scheme?
nhl09b05q08 nhl09b_EN_1.0.sav Did you receive care after the treatment of your illness?
nhl09b05q09 nhl09b_EN_1.0.sav Did you get extra care from a psychologist?
nhl09b05q10 nhl09b_EN_1.0.sav Did you get extra care from a sexologist?
nhl09b05q11 nhl09b_EN_1.0.sav Did you get extra care from a social worker?
nhl09b05q12 nhl09b_EN_1.0.sav Did you get extra care from pastoral care?
nhl09b05q13 nhl09b_EN_1.0.sav Did you get extra care from your general practitioner?
nhl09b05q14 nhl09b_EN_1.0.sav Did you get extra care from a dietist
nhl09b05q15 nhl09b_EN_1.0.sav Did you get extra care from a physiotherapist?
nhl09b05q16 nhl09b_EN_1.0.sav Did you get extra care from recovery and balance?
nhl09b05q17 nhl09b_EN_1.0.sav Did you get extra care from creative therapy?
nhl09b05q18 nhl09b_EN_1.0.sav Did you get extra care from an oncological nurse?
nhl09b05q19 nhl09b_EN_1.0.sav Did you get extra care from a peer group
nhl09b05q20 nhl09b_EN_1.0.sav Did you get extra care from someone else?
nhl09b07q01 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Heart condition
nhl09b07q02 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Stroke
nhl09b07q03 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: High blood pressure
nhl09b07q04 nhl09b_EN_1.0.sav 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
nhl09b07q05 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Diabetes
nhl09b07q06 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Ulcer
nhl09b07q07 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Kidney disease
nhl09b07q08 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Liver disease
nhl09b07q09 nhl09b_EN_1.0.sav 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
nhl09b07q10 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Thyroid disease
nhl09b07q11 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Depression
nhl09b07q12 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Arthritis
nhl09b07q13 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Backache
nhl09b07q14 nhl09b_EN_1.0.sav Please indicate for each condition or disease whether you have it now or have had it in the past 12 months: Rheumatism
nhl09b07q15 nhl09b_EN_1.0.sav Are you being treated for your heart condition?
nhl09b07q16 nhl09b_EN_1.0.sav Are you being treated for your stroke?
nhl09b07q17 nhl09b_EN_1.0.sav Are you being treated for your high blood pressure?
nhl09b07q18 nhl09b_EN_1.0.sav Are you being treated for your asthma, chronic bronchitis or COPD?
nhl09b07q19 nhl09b_EN_1.0.sav Are you being treated for your diabetes?
nhl09b07q20 nhl09b_EN_1.0.sav Are you being treated for your ulcer?
nhl09b07q21 nhl09b_EN_1.0.sav Are you being treated for your kidney disease?
nhl09b07q22 nhl09b_EN_1.0.sav Are you being treated for your liver disease?
nhl09b07q23 nhl09b_EN_1.0.sav Are you being treated for your anemia or other blood condition?
nhl09b07q24 nhl09b_EN_1.0.sav Are you being treated for your thyroid disease?
nhl09b07q25 nhl09b_EN_1.0.sav Are you being treated for your depression?
nhl09b07q26 nhl09b_EN_1.0.sav Are you being treated for your arthritis?
nhl09b07q27 nhl09b_EN_1.0.sav Are you being treated for your backache?
nhl09b07q28 nhl09b_EN_1.0.sav Are you being treated for your rheumatism?
nhl09b07q29 nhl09b_EN_1.0.sav Does your heart condition interfere with your activities?
nhl09b07q30 nhl09b_EN_1.0.sav Does your stroke interfere with your activities?
nhl09b07q31 nhl09b_EN_1.0.sav Does your high blood pressure interfere with your activities?
nhl09b07q32 nhl09b_EN_1.0.sav Does your asthma, chronic bronchitis or COPD interfere with your activities?
nhl09b07q33 nhl09b_EN_1.0.sav Does your diabetes interfere with your activities?
nhl09b07q34 nhl09b_EN_1.0.sav Does your ulcer interfere with your activities?
nhl09b07q35 nhl09b_EN_1.0.sav Does your kidney disease interfere with your activities?
nhl09b07q36 nhl09b_EN_1.0.sav Does your liver disease interfere with your activities?
nhl09b07q37 nhl09b_EN_1.0.sav Does your anemia or other blood condition interfere with your activities?
nhl09b07q38 nhl09b_EN_1.0.sav Does your thyroid disease interfere with your activities?
nhl09b07q39 nhl09b_EN_1.0.sav Does your depression interfere with your activities?
nhl09b07q40 nhl09b_EN_1.0.sav Does your arthritis interfere with your activities?
nhl09b07q41 nhl09b_EN_1.0.sav Does your backache interfere with your activities?
nhl09b07q42 nhl09b_EN_1.0.sav Does your rheumatism interfere with your activities?
nhl09b06q06 nhl09b_EN_1.0.sav Which changes have you experienced in your work situation due to cancer?
nhl09b06q07 nhl09b_EN_1.0.sav Did you have trouble finding (additional) health insurance, because of cancer?
nhl09b06q08 nhl09b_EN_1.0.sav You have indicated that you have had trouble getting (additional) health insurance. What was the outcome?
nhl09b06q09 nhl09b_EN_1.0.sav Did you have trouble getting life insurance, because of cancer?
nhl09b06q10 nhl09b_EN_1.0.sav You have indicated that you have had trouble getting life insurance. What was the outcome?
nhl09b06q11 nhl09b_EN_1.0.sav Did you have trouble getting mortgage, because of cancer?
nhl09b06q12 nhl09b_EN_1.0.sav You have indicated that you have had trouble getting mortgage. What was the outcome?
nhl09b09q01 nhl09b_EN_1.0.sav Do you have any trouble doing strenuous activities, like carrying a heavy shopping bag or a suitcase?
nhl09b09q02 nhl09b_EN_1.0.sav Do you have any trouble taking a long walk?
nhl09b09q03 nhl09b_EN_1.0.sav Do you have any trouble taking a short walk outside of the house?
nhl09b09q04 nhl09b_EN_1.0.sav Do you need to stay in bed or a chair during the day?
nhl09b09q05 nhl09b_EN_1.0.sav Do you need help with eating, dressing, washing yourself or using the toilet?
nhl09b09q06 nhl09b_EN_1.0.sav Were you limited in doing either your work or other daily activities?
nhl09b09q07 nhl09b_EN_1.0.sav Were you limited in pursuing your hobbies or other leisure time activities
nhl09b09q08 nhl09b_EN_1.0.sav Were you short of breath?
nhl09b09q09 nhl09b_EN_1.0.sav Have you had pain?
nhl09b09q10 nhl09b_EN_1.0.sav Did you need to rest?
nhl09b09q11 nhl09b_EN_1.0.sav Have you had trouble sleeping?
nhl09b09q12 nhl09b_EN_1.0.sav Have you felt weak?
nhl09b09q13 nhl09b_EN_1.0.sav Have you lacked appetite?
nhl09b09q14 nhl09b_EN_1.0.sav Have you felt nauseated?
nhl09b09q15 nhl09b_EN_1.0.sav Have you vomited?
nhl09b09q16 nhl09b_EN_1.0.sav Have you been constipated?
nhl09b09q17 nhl09b_EN_1.0.sav Have you had diarrhea?
nhl09b09q18 nhl09b_EN_1.0.sav Were you tired?
nhl09b09q19 nhl09b_EN_1.0.sav Did pain interfere with your daily activities?
nhl09b09q20 nhl09b_EN_1.0.sav Have you had difficulty in concentrating on things, like reading a newspaper or watching television?
nhl09b09q21 nhl09b_EN_1.0.sav Did you feel tense?
nhl09b09q22 nhl09b_EN_1.0.sav Did you worry?
nhl09b09q23 nhl09b_EN_1.0.sav Did you feel irritable?
nhl09b09q24 nhl09b_EN_1.0.sav Did you feel depressed?
nhl09b09q25 nhl09b_EN_1.0.sav Have you had difficulty remembering things?
nhl09b09q26 nhl09b_EN_1.0.sav Has your physical condition or medical treatment interfered with your family life?
nhl09b09q27 nhl09b_EN_1.0.sav Has your physical condition or medical treatment interfered with your social activities?
nhl09b09q28 nhl09b_EN_1.0.sav Has your physical condition or medical treatment caused you financial difficulties?
nhl09b09q29 nhl09b_EN_1.0.sav How would you rate your overall health during the past week?
nhl09b09q30 nhl09b_EN_1.0.sav How would you rate your overall quality of life during the past week?
nhl09b09s01 nhl09b_EN_1.0.sav Physical Function
nhl09b09s02 nhl09b_EN_1.0.sav Role Function
nhl09b09s03 nhl09b_EN_1.0.sav Emotional Function
nhl09b09s04 nhl09b_EN_1.0.sav Cognitive Function
nhl09b09s05 nhl09b_EN_1.0.sav Social Function
nhl09b09s06 nhl09b_EN_1.0.sav Global health status/QoL
nhl09b09s07 nhl09b_EN_1.0.sav Fatigue
nhl09b09s08 nhl09b_EN_1.0.sav Nausea / vomiting
nhl09b09s09 nhl09b_EN_1.0.sav Pain
nhl09b09s10 nhl09b_EN_1.0.sav Dyspnoea
nhl09b09s11 nhl09b_EN_1.0.sav Insomnia
nhl09b09s12 nhl09b_EN_1.0.sav Appetite loss
nhl09b09s13 nhl09b_EN_1.0.sav Constipation
nhl09b09s14 nhl09b_EN_1.0.sav Diarrhea
nhl09b09s15 nhl09b_EN_1.0.sav Financial problems
nhl09b11q01 nhl09b_EN_1.0.sav Have you lost weight?
nhl09b11q02 nhl09b_EN_1.0.sav Have you had a dry mouth?
nhl09b11q03 nhl09b_EN_1.0.sav Did you bruise?
nhl09b11q04 nhl09b_EN_1.0.sav Did you have abdominal discomfort?
nhl09b11q05 nhl09b_EN_1.0.sav Has your temperature been going up and down?
nhl09b11q06 nhl09b_EN_1.0.sav Did you have night sweats?
nhl09b11q07 nhl09b_EN_1.0.sav Have you had skin problems (e.g. itchy, dry)?
nhl09b11q08 nhl09b_EN_1.0.sav Did you feel ill or unwell?
nhl09b11q09 nhl09b_EN_1.0.sav Did you feel lethargic?
nhl09b11q10 nhl09b_EN_1.0.sav Have you felt “slowed down”?
nhl09b11q11 nhl09b_EN_1.0.sav Did you have tingling hands or feet?
nhl09b11q12 nhl09b_EN_1.0.sav Were you limited in planning activities (for example meeting friends)?
nhl09b11q13 nhl09b_EN_1.0.sav Have you worried about your health in the future?
nhl09b11q14 nhl09b_EN_1.0.sav Have you had trouble with chest infections?
nhl09b11q15 nhl09b_EN_1.0.sav Have you had trouble with other infections?
nhl09b11q16 nhl09b_EN_1.0.sav Have you needed repeated courses of antibiotics?
nhl09b11q17 nhl09b_EN_1.0.sav Have you worried about picking up an infection?
nhl09b20q01 nhl09b_EN_1.0.sav Mobility
nhl09b20q02 nhl09b_EN_1.0.sav Self care
nhl09b20q03 nhl09b_EN_1.0.sav Daily affairs (For example work, school, householding, family- and leisure activities)
nhl09b20q04 nhl09b_EN_1.0.sav Pain / troubles
nhl09b20q05 nhl09b_EN_1.0.sav Mood
nhl09b21q01 nhl09b_EN_1.0.sav I make contact easily when I meet people.
nhl09b21q02 nhl09b_EN_1.0.sav I often make a fuss about unimportant things.
nhl09b21q03 nhl09b_EN_1.0.sav I often talk to strangers
nhl09b21q04 nhl09b_EN_1.0.sav I often feel unhappy
nhl09b21q05 nhl09b_EN_1.0.sav I am often irritated
nhl09b21q06 nhl09b_EN_1.0.sav I often feel inhibited in social interactions
nhl09b21q07 nhl09b_EN_1.0.sav I take a gloomy view on things
nhl09b21q08 nhl09b_EN_1.0.sav I find it hard to start a conversation.
nhl09b21q09 nhl09b_EN_1.0.sav I am often in a bad mood
nhl09b21q10 nhl09b_EN_1.0.sav I am a closed kind of person
nhl09b21q11 nhl09b_EN_1.0.sav I would rather keep other people at a distance
nhl09b21q12 nhl09b_EN_1.0.sav I often find myself worrying about something
nhl09b21q13 nhl09b_EN_1.0.sav I am often down in the dumps
nhl09b21q14 nhl09b_EN_1.0.sav When socializing, I don’t find the right things to talk about.
nhl09b21s01 nhl09b_EN_1.0.sav DS14 negative affect
nhl09b21s02 nhl09b_EN_1.0.sav DS14 social inhibition
nhl09b21s03 nhl09b_EN_1.0.sav Type D personality
nhl09b22q01 nhl09b_EN_1.0.sav How much does your illness affect your life?
nhl09b22q02 nhl09b_EN_1.0.sav How long do you think your illness will continue?
nhl09b22q03 nhl09b_EN_1.0.sav How much control do you feel you have over your illness?
nhl09b22q04 nhl09b_EN_1.0.sav How much do you think your treatment can help your illness?
nhl09b22q05 nhl09b_EN_1.0.sav How much do you experience symptoms from your illness?
nhl09b22q06 nhl09b_EN_1.0.sav How concerned are you about your illness?
nhl09b22q07 nhl09b_EN_1.0.sav How well do you feel you understand your illness?
nhl09b22q08 nhl09b_EN_1.0.sav How much does your illness affect you emotionally? (e.g. does it make you angry, scared, upset or depressed?
nhl09b23q01 nhl09b_EN_1.0.sav I am bothered by fatigue
nhl09b23q02 nhl09b_EN_1.0.sav I get tired very quickly
nhl09b23q03 nhl09b_EN_1.0.sav I don’t do much during the day
nhl09b23q04 nhl09b_EN_1.0.sav I have enough energy for everyday life
nhl09b23q05 nhl09b_EN_1.0.sav Physically, I feel exhausted
nhl09b23q06 nhl09b_EN_1.0.sav I have problems starting things
nhl09b23q07 nhl09b_EN_1.0.sav I have problems thinking clearly
nhl09b23q08 nhl09b_EN_1.0.sav I feel no desire to do anything
nhl09b23q09 nhl09b_EN_1.0.sav Mentally, I feel exhausted
nhl09b23q10 nhl09b_EN_1.0.sav When I am doing something, I can concentrate quite well
nhl09b23s01 nhl09b_EN_1.0.sav FAS total score
nhl09b24q01 nhl09b_EN_1.0.sav I feel tense or ‘wound up’
nhl09b24q02 nhl09b_EN_1.0.sav I still enjoy the things I used to enjoy
nhl09b24q03 nhl09b_EN_1.0.sav I get a sort of frightened feeling as if something awful is about to happen
nhl09b24q04 nhl09b_EN_1.0.sav I can laugh and see the funny side of things
nhl09b24q05 nhl09b_EN_1.0.sav Worrying thoughts go through my mind
nhl09b24q06 nhl09b_EN_1.0.sav I feel cheerful
nhl09b24q07 nhl09b_EN_1.0.sav I can sit at ease and feel relaxed
nhl09b24q08 nhl09b_EN_1.0.sav I feel as if I am slowed down
nhl09b24q09 nhl09b_EN_1.0.sav I get a sort of frightened feeling like ‘butterflies’ in the stomach
nhl09b24q10 nhl09b_EN_1.0.sav I have lost interest in my appearance
nhl09b24q11 nhl09b_EN_1.0.sav I feel restless, as if I have to be on the move
nhl09b24q12 nhl09b_EN_1.0.sav I look forward with enjoyment to things
nhl09b24q13 nhl09b_EN_1.0.sav I get sudden feelings of panic
nhl09b24q14 nhl09b_EN_1.0.sav I can enjoy a good book or radio or TV program
nhl09b24s01 nhl09b_EN_1.0.sav HADS anxiety
nhl09b24s02 nhl09b_EN_1.0.sav HADS depressie
nhl09b26q01 nhl09b_EN_1.0.sav How much information have you received on: The diagnosis of your disease?
nhl09b26q02 nhl09b_EN_1.0.sav How much information have you received on: The extent (spread) of your disease?
nhl09b26q03 nhl09b_EN_1.0.sav How much information have you received on: The possible causes of your disease?
nhl09b26q04 nhl09b_EN_1.0.sav How much information have you received on: Whether the disease is under control?
nhl09b26q05 nhl09b_EN_1.0.sav How much information have you received on: The purpose of any medical tests you have had or may undergo?
nhl09b26q06 nhl09b_EN_1.0.sav How much information have you received on: The procedures of the medical tests?
nhl09b26q07 nhl09b_EN_1.0.sav How much information have you received on: The results of the medical tests you have already received?
nhl09b26q08 nhl09b_EN_1.0.sav How much information have you received on: The medical treatment (chemotherapy, radiotherapy, surgery or other treatment modality)?
nhl09b26q09 nhl09b_EN_1.0.sav How much information have you received on: Non-medical treatments (for example herbal therapy, homeopathy, relaxation therapy)?
nhl09b26q10 nhl09b_EN_1.0.sav How much information have you received on: The expected benefit of the treatment?
nhl09b26q11 nhl09b_EN_1.0.sav How much information have you received on: The possible side-effects of your treatment?
nhl09b26q12 nhl09b_EN_1.0.sav How much information have you received on: The expected effects of the treatment on disease symptoms?
nhl09b26q13 nhl09b_EN_1.0.sav How much information have you received on: The effects of the treatment on social and family life?
nhl09b26q14 nhl09b_EN_1.0.sav How much information have you received on: The effects of the treatment on sexual activity?
nhl09b26q15 nhl09b_EN_1.0.sav How much information have you received on: Additional help outside the hospital (e.g. help with daily activities, self help groups, district nurses)?
nhl09b26q16 nhl09b_EN_1.0.sav How much information have you received on: Rehabilitation services (e. g. physiotherapy, occupational therapy)?
nhl09b26q17 nhl09b_EN_1.0.sav How much information have you received on: Aspects of managing your illness at home?
nhl09b26q18 nhl09b_EN_1.0.sav How much information have you received on: Possible professional psychological support?
nhl09b26q19 nhl09b_EN_1.0.sav How much information have you received on: Different places of care (hospitals/outpatient services/home)?
nhl09b26q20 nhl09b_EN_1.0.sav How much information have you received on: Things that you can do to help yourself get well (rest, contact with others..)?
nhl09b26q21 nhl09b_EN_1.0.sav Have you received written information?
nhl09b26q22 nhl09b_EN_1.0.sav Have you received information on CD or tape / video?
nhl09b26q23 nhl09b_EN_1.0.sav Were you satisfied with the amount of information you received?
nhl09b26q24 nhl09b_EN_1.0.sav Do you wish to receive more information?
nhl09b26q25 nhl09b_EN_1.0.sav Do you wish that you had received less information?
nhl09b26q26 nhl09b_EN_1.0.sav Overall has the information you have received been helpful?
nhl09b26s01 nhl09b_EN_1.0.sav Information on your disease
nhl09b26s02 nhl09b_EN_1.0.sav Information on your medical tests
nhl09b26s03 nhl09b_EN_1.0.sav Information on treatment/your treatments
nhl09b26s04 nhl09b_EN_1.0.sav Information on other services
nhl09b26s05 nhl09b_EN_1.0.sav Information on other areas/places of care
nhl09b26s06 nhl09b_EN_1.0.sav Information on things patients can do to get well
nhl09b26s07 nhl09b_EN_1.0.sav Written information
nhl09b26s08 nhl09b_EN_1.0.sav Information on cd, tape, video
nhl09b26s09 nhl09b_EN_1.0.sav Satisfaction with information
nhl09b26s10 nhl09b_EN_1.0.sav Desire to receive more information
nhl09b26s11 nhl09b_EN_1.0.sav Desire to receive less information
nhl09b26s12 nhl09b_EN_1.0.sav Helpfulness of information
nhl09b27q01 nhl09b_EN_1.0.sav Do you use the Internet?
nhl09b27q02 nhl09b_EN_1.0.sav Did you use the Internet to find information about lymphoma?